NICE refuses yet another drug for R.A.

October 2, 2009 at 5:36 pm | Posted in Me, rheumatoid arthritis (RA) | 9 Comments
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NICE have rejected yet another R.A. drug – this time for ‘moderate to severe R.A.’ It’s RoActemra (tocilizumab), known as Actemra in the U.S. apparently.

OK, so right now this isn’t a huge personal concern for me – apart from the ‘scrofulous pustule’ and other minor unpleasant side effects, the methotrexate is doing its job; but it’s a huge concern for R.A. patients in the U.K. in general, and potentially also for me personally in the future.

Here’s a link to an article about it, as there’s no point in me saying everything that’s already been said … and that I’ve already said about other drugs on this blog! In brief, and I quote: “the Committee has concluded that, at an approximate cost of £9,295 a year for a patient weighing approximately 70 kg, the therapy is just too expensive for use on the NHS and would not represent a cost-effective use of resources.”

I’d better start losing weight now, as if I ever need anti-TNFs in future NICE will probably decide it’s too expensive to fund overweight patients, as underweight patients need less drug! Well I suppose if NICE are inadvertently making me lose weight, that’s one positive benefit of them!



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  1. That is really scary! Seems like the criteria should be related to whether or not the medicine works.

  2. Will that mean that NHS patients will have no way to access the drug? I just looked it up to see if it’s available in Canada or not, but I can’t find anything.

    Last year I fought and fought for temporary coverage of Enbrel from the Ontario Government, in between graduating from school and finding a job with drug benefits. It took nearly a year before they would approve Enbrel (even though I had been on it for 5 years at the time!). In the meantime, I had to try a handful of other drugs and an absolutely enormous dose of methotrexate to make sure there wasn’t anything cheaper that could help me. I ended up going without Enbrel for 3 weeks and felt horrible; I could hardly even dress myself. It was so depressing and frightening, and it certainly opened my eyes to what it’s like for people who can’t access the drugs they need.

  3. The criteria SHOULD be related to whether it works – that’s what this whole ‘National Institute for Clinical EXCELLENCE’ is supposed to be about, but as soon as it was introduced everyone knew it was just a cost management exercise, and so it’s proved to be. The irony is that the state still ends up funding care for people totally incapacitated by R.A. who would NOT be incapacitated if they had proper effective treatment! Grr …

  4. Hi Helen,

    Yup, that’s exactly what it means – unless they wish to fund themselves privately. I don’t know if it’s yet available ANYWHERE, this particular one, as it’s just come through trials I think, but it’s the same situation with a whole lot of other biologics.

    I read a bit about the Enbrel thing on your blog – what a complete nightmare! I’m glad you got there in the end but sorry you had to go through such hell first!!

  5. That’s awful!

    And yes, that’s exactly what happens – the state just ends up having to pay for people who can’t work or care for themselves because they can’t access the drugs they need. I actually wrote a letter to a government official (who ended up being very helpful) about how they could either help me access the drugs I need for a few months so that I would be able to go out and look for a job and contribute to society, or leave me on the couch, unable to do anything productive. It should be a no-brainer.

  6. Well done for getting through to someone ‘in power’ using this argument. I tried it on my MP who did actually write to the health minister about it, got her obviously standard reply back about ‘your constituent’ and then a name in there that wasn’t mine which someone had just gone over in thick black marker pen to disguise the fact, and sent that back to me. Gee thanks … that was helpful. Mind you – that was just a moan on behalf of all R.A. patients, and not my specific issue, as yours was.

    It’s mind boggling that these people can’t work out the argument for themselves. Trouble is everything’s in ‘silos’ so as long as NHS aren’t paying they don’t care. If you’re stuck needing home help etc. that’s not their problem – it’s social services … differnet budget! Aaaaaaaaaargh!

  7. Ugh – it’s so frustrating! I contacted my member of provincial parliament initially, and really got no help at all. The group who did help me was the Ombudsman’s Office – apparently a “watchdog” for all provincial government bodies. They phoned me the same day they received my letter, assigned me a case number and an actual human to talk to whenever I wanted, and eventually got me the name of the person who had been refusing my rheumatologist’s appeals. I think it was the fact that we were finally able to deal with individuals, rather than anonymous blobs, that made the difference.

    I’m just hoping it doesn’t all happen again if I go back to school…!

  8. The trouble with having to deal with individuals is if the useful one who knows you has now left and you go back to school … yes, could be ‘fun’! I’m glad you got it all sorted out though … although, as you say, perhaps not permanently. It’s also frustrating that you may have got it worked out for yourself that once, but every other person going through something similar has to fight their own individual battle against some other individual!

  9. I know – I was really lucky to have time to devote to writing letters and making phone calls, and a rheumatologist who fought really hard for me. Not everyone will have those resources and I know there are people not getting the medication they need.

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