The ramblings of a bewildered and broke Penguin

January 19, 2010 at 11:35 am | Posted in rheumatoid arthritis (RA) | 10 Comments
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Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you,  m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.

Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.

Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.

Hey ho – it’s only money … not as important as health.

I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.

Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and here, to name but a few.

Although I suppose it’s not really an argument, since they’re not reading it and wouldn’t take any notice if they were …


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  1. Ah, but think of all of those jobs in the Health, DWP and Social Services departments that rely on people not being fit and healthy!

  2. True … a tad cynical, but true …

  3. I’m glad to hear that you’re doing better.

    Just curious, what’s it take to qualify for a biologic?

  4. I sure hope you ticked that little box!

    Well, if NICE don’t approve it then there is no qualifying for it; you just can’t have it unless you go private. Going private is, I suppose, the equivalent of not having health insurance – you just fork out the £9,000 per year yourself … and that’s just the cost of the drugs. You’d also have to pay for all hospital treatment. This wouldn’t be the case if you actually already HAD private health insurance before the RA started, but trust me, even then they find ways to wriggle out of paying it! They’ll only pay for a very short time for anything that counts as a chronic illness. After that time, it’s your problem.

    If NICE DO approve it then you still have to qualify. To do that you need to get a high DAS (disease activity score). Do they use those in the US? You also have to score highly (I think, but don’t quote me on this) on some test that decides how badly it’s affecting your life.

    So long as you’re half dead already, you’ll qualify. Great. And let’s face it, if you’re unlucky enough to have rampaging severe RA then you’ll qualify no problem. If you have ‘creeping’ RA that just gradually gets progressively worse, then you’ll just have to sit and wait, bide your time until you can’t keep your job or lead a normal active life, and then wahay, you’ll qualify. OK, so you’re out of a job by then … but never mind, it’ll all be OK soon. (OK, getting cynical here – and believe me, I know that biologics are not actually the panacea we’d like to think they are for everyone!)

    Better stop before cynical becomes seriously bitter! ;o)

    Good night!

  5. Yes, I ticked the little box 🙂
    (here, different doctors use different methods of measuring disease activity)

    So… even though early aggressive treatment is recommended, it’s not actually possible unless you’re independently wealthy? People must become disabled, all the while knowing that it was preventable (or at the least could have been delayed)? Once you’re experiencing incurable pain and unable to hold a job, THEN you can get treatment? There is something seriously wrong with that system! Any chance you can fudge your reporting to inflate your DAS score and get treatment sooner?

  6. I’m glad the tingly business in your hands went away — what was it caused by, anyway? Do you know?

    I think BigPharma should not be allowed to charge such outrageous prices for these drugs. I understand they’re difficult to make, but honestly, $9,000 per yer — or more — for a medicine? This is the reason that your govt. and mine don’t want to make these drugs available. I’m not sure how we fix this, but I do think these companies ought to have to explain rather publicly why a drug costs what it does…

    Did that make sense? Anyhoo. Hope you’re feeling all right, Polly. Always good to hear from you!

  7. This whole issue of cost vs. patient benefit is a complicated one that I’m sure has different manifestations in national healthcare (as in the UK) and in private systems (as in the US). And who makes the decisions? There’s a whole arena of study called pharmaeconomics that deals with these issues.

  8. It is indeed complicated. There’s a field of study for just about anything though. There’s a field of study for insects, it’s called entomology. I have a PhD in it. That doesn’t mean I can avoid a fire ant bite any better than the next penguin.

  9. Hi Warm Socks,

    Yep, definitely something wrong with the system. I could be wrong about this but I THINK you also usually have to go up against a panel (not just your consultant, but a bunch of medics you’ve never met) to prove you need the biologic. A bit like a job interview, only showing why you’re worthy of the biologic rather than job. I think Frankie ( posted something about hers a while back.

    I have read stuff about fudging the DAS, and also about the fact that we Brits are brought up to have a ‘stiff upper lip’ and not go ouch when prodded, but that you need to do lots of ‘OUUUUUUUUUCH!’ to get a good DAS! Not sure about the veracity of any of this mind, as I haven’t been through it myself or got personal friends who’ve told me about it.

    Sooooooo …. I suppose I’m writing the sort of blog that I hate – all heresay and no firm facts. Oops! Mind you, much of what I’ve heard about DAS and panels and things comes from NRAS – forum and magazine – and I think that’s pretty reliable. ;o)

  10. Hi Wren,

    Dunno re the tinglywinglyness – suspect a trapped nerve in the neck caused by some slight swelling (probably from RA), but who knows … it’s gone, that’s all I care about!

    Ah … drug companies …well I hate to be the lone voice in the desert defending them, but I have been meaning to write a post about this for years … perhaps now’s the time. Watch this space … ;o)


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