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Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

Discussion in 'Phoenix Rising Articles' started by Sasha, Jul 1, 2015.

  1. Kati

    Kati Patient in training

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    Yeah I said that. In Canada too, it would be free if there was a doctor willing to prescribe it and a hospital willing to administer it. All we need is approval, and for the doctor to unlearn everything they have learnt about ME. I think it is where reside te hurdle.
     
    Last edited: Dec 18, 2016
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  2. deleder2k

    deleder2k Senior Member

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    Absolutely, I don't know whether some insurance plans will cover it or not. It is not my area of expertise. As a Norwegian I know nothing about health insurance. It is an unknown world for me. It goes both ways though. I remember when I was trying to convince University of Miami that the Kingdom of Norway would pay my medical bills if I got sick, and that pre-existing conditions were included. They refused to accept the letter from the Norwegian Department of Health three times because they didn't believe that the actual Norwegian government would pay anything since I hadn't paid a dime for it, and since pre-existing conditions were included. They claimed that if I was medically covered it must have been through a private company which then the government paid... After more letters they finally accepted my medical insurance certificate from the Department of Health in Norway.

    One odd thing though is if you pay for Rituximab in Norway you'll be charged 25% VAT (similar to sales tax). That means you pay thousands of dollars for a medicine because the public healthcare system has nothing to offer you - and top of that you'll be charged a 25% tax...

    Lets hope Rituximab will be approved for some of us shortly. I don't know whether it will be approved in the UK if the results are good, but then UK residents can fly over the North Sea to Norway to get private treatment if they can afford it.
     
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  3. Kenny Banya

    Kenny Banya Senior Member

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    2022??!!!
    Does that need to be adjusted for Brexit?
     
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  4. Kenny Banya

    Kenny Banya Senior Member

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    You could fake Rheumatoid Arthritis.
     
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  5. deleder2k

    deleder2k Senior Member

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    If the Norwegian trial does show good results, and if we also get a biomarker that shows who's likely to benefit or not I would certainly decide getting treatment at a private hospital. I don't know the rules in U.K or Australia, but I would guess that great doctors at private hospitals would be able to treat patients off label with rituximab. Then you have two phase 2 studies, + a major study with 152 patients. Rituximab is not a new drug. I can't see why an experienced rheumatologist/oncologist at a private facility shouldn't be allowed to decide to go down this path if the results are as good as we hope.
     
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  6. Kenny Banya

    Kenny Banya Senior Member

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    My understanding is that off label is not government subsidised so the cost would be huge
    Admittedly, it would at least save the $10,000 in accomodation & plane flights from Australia to Norway, 5 times over 12 months!!
     
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  7. deleder2k

    deleder2k Senior Member

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    Lets hope some doctors in AU or NZ will act after the study is published. I guess flyin' to Sydney or Brisbane is somewhat cheaper than flying to Stavanger from the land of kangaroos and convicts! :cool:
     
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  8. RogerBlack

    RogerBlack Senior Member

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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for that info and I bookmarked the link but I would be very hesitant to use a bio-similar version of Rituximab at his point b/c we don't know what additives or fillers are in it that could be toxic or cause an allergic reaction. If I truly get the opportunity to try it (still don't know), it would only be the true brand version of Rituximab even if it costs more.
     
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  10. deleder2k

    deleder2k Senior Member

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  11. Snow Leopard

    Snow Leopard Hibernating

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    Biosimilars are each completely different drugs and have to undergo their own safety and efficacy trials to be considered safe and viable treatments.

    Truxima being approved is interesting, however being approved for a cancer which is highly likely to kill you is different from being approved for an autoimmune condition. Cancer drugs can often be tentatively approved without very large phase three trials, even if there is risk of death from the drug, simply because the overall risk of death with the treatment is less than the alternatives.

    edit - it seems Truxima has been approved for RA... Interesting. If the current Rituximab trials demonstrate efficacy, there is scope for Truxima trials for ME.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    That is very interesting and I am going to confirm w/my doctor that if I am indeed approved for RTX that I am given the REAL RTX and my insurance does not try to give me Truxima or some generic version. Am so glad I saw this.
     

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