The 12th Invest in ME Research Conference June, 2017, Part 2
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Norwegian TV: Patients pay out of pocket for private Rituximab treatment

Discussion in 'Rituximab: News and Research' started by deleder2k, Mar 29, 2016.

  1. deleder2k

    deleder2k Senior Member

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    Since Easter is over and I had nothing to do a translated a news clip from Norway which aired 27 November 2015 about private Rituximab treatment in Norway.

     
  2. Apple

    Apple Senior Member

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    Thank you for taking the time to translate it @deleder2k . :bouquet: I would so love to do this, but not in a position to travel atm. I really hope that they are allowed to continue giving this treatment and the government doesn't stop them, which is totally what would happen in the UK.
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    Can't see or hear the translation, do I have to set something?
     
  4. deleder2k

    deleder2k Senior Member

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    Click on "CC".
     
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  5. TiredSam

    TiredSam The wise nematode hibernates

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    Thanks, very interesting. € 21,000!
     
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  6. deleder2k

    deleder2k Senior Member

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    I think it is somewhat exaggerated. The prices are as following:

    - Consultation is 5,000 NOK
    - First treatment is 8,000 + consultation of 2,300. Cost of Rituximab 23,800. Same cost for the second infusion.

    - Maintenance infusions: 5000 per infusion + 2,300 in consultation fee. The cost of Rituximab for the third infusion and onwards is 11,900 each time.

    First consultation: 5,000 NOK (414 GBP/ 528 EUR/590 USD)
    Loading doses: (8,000 + 2,300 + 23,800) * 2 = 68,200 NOK (5642 GBP/ 7193 EUR/8056 USD)
    4 maintenance doses (month 3,6,9,12): (5,000 + 2,300 + 11,900) * 4 = 76,800 NOK (6353 GBP/8100 EUR/9072 USD)
    Total = 150,000 NOK (12,409 GBP/15,820 EUR/17,719 USD)

    Note: there could be a fee for certain blood tests
     
    Last edited: Mar 29, 2016
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  7. Gijs

    Gijs Senior Member

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    I would like to know the specific symptoms from these 1/3 recovered patiënts.
     
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  8. Apple

    Apple Senior Member

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    Plus accommodation (and flights!) for those of us that don't live in Norway. Does anyone know how long you have to stay in hospital / locally after getting the infusion?
     
  9. deleder2k

    deleder2k Senior Member

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    Don't think that is easy to get ahold of. Perhaps you could send a message to the man who recovered on Facebook. Perhaps he answers. You could also read the studies that are published if you haven't.
     
  10. deleder2k

    deleder2k Senior Member

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    @Apple you can fly back to the U.K an hour after the infusion.
     
  11. MadeleineKM

    MadeleineKM Senior Member

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    I believed they was going to be stopped anytime from doing this by the Health directory or was they cleared from the case?
     
  12. rebar

    rebar Senior Member

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    thank you deleder interesting, cost is a pleasant surprise. Living in NYC makes the other cost pretty high, travel, accommodations. It would be great if a package could be put together which included everything.
    I so badly want treatment.
     
    Apple likes this.
  13. Invisible Woman

    Invisible Woman Senior Member

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    A 2 in 3 chance of improvement and a 1 in 3 chance of recovery.....vs another 20+ years of pain and isolation. I'd seriously consider giving it a go with those odds. Snag is finding the money after 20 years or so out of work.
     
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  14. deleder2k

    deleder2k Senior Member

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    Travel and accommodation would probably cost you a lot (in financial and physical terms). Check out Norwegian if you're flying out from NYC. If you're lucky you can get a round-trip ticket for under $300 to Oslo, Norway.

    It seems like 1/3 gets "healthy" again, but one major point is left out from the clip: most relapse without maintenance doses. It could take a few years, but it seems that a majority relapses. But who knows, by that time we could have other drugs that are more effective.
     
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  15. Kati

    Kati Patient in training

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    If the majority relapse after the B-cells return, then it gives the researchers important clues as of where the defect or where the problem resides.
     
  16. rebar

    rebar Senior Member

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    Yes it may be difficult, very difficult, but there are not many options out there. If I was able to get treatment on the west coast I would still have the same travel and lodging issues. I'd venture a guess and say this may be less total cost. I would assume they would be following the latest protocol which supposedly extends remission. In a year or two there will probably be more options, that said a year or so of remission while waiting for further advances or for it to be available here in the states is my reasoning.
    Anyway I am not moving on this immediately, some info that may help assess odds would be welcome.
    Big waiting game on all this.
     
    Last edited: Mar 29, 2016
  17. jimells

    jimells Senior Member

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    I haven't traveled more than ten miles from home in almost three years, and I've only left the neighborhood once since November. Even if I could get the treatment in the local hospital, I'm not sure I would trust them to properly monitor/treat any possible bad reactions.

    Still, it is encouraging to hear of people getting the treatment privately. They are definitely blazing a trail. The more private treatment there is, the sooner the rest of us will be able to follow that trail.
     
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  18. deleder2k

    deleder2k Senior Member

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    If you go to a good hospital they will monitor you. As far as I know patients have a nurse 3 maximum 3 feet away until the infusion is completed. In Norway there is also a requirement that an oncologist is available at all times.

    Remember that many thousands of patients receive Rituximab for different conditions every day. As long as the doctor or hospital have treated patients earlier on with the drug I wouldn't be worried if you live in the Western World.
     
  19. viggster

    viggster Senior Member

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    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.
     
  20. frujo

    frujo

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    Hello, I am new here on the forum. I am considering Rituximab or KDM, but I am so unsure! Does anyone else has any thought about this?
     

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