I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
Pollyanna Penguin's RA Blog 
This makes me realize more than ever that I was absolutely right in my decision to go on a combination of methotrexate and Enbrel right off the bat after my diagnosis on Jan. 11 of this year.
I was so lucky on two fronts: 1) after a sudden onset of symptoms beginning at the end of Nov. 09, I was very quickly diagnosed, and 2) I was approved for Enbrel by my insurance company without being made to wait to try other DMARDs first.
I live in Canada (I’m not sure what the experience here has been for others with RA, though).
Great to hear a positive story about insurance companies. 🙂 I hope it’s working really well for you and keeps doing so! I gather from Helen (Pens and Needles blog – well worth a visit) that things ain’t always easy in Canada either.
Wonderful post. You’re asking exactly the right question, too. Can you send this post as a letter to the editor to the NRAS for publication in their next issue? And ask for someone with some expertise to answer? (grin)
Might as well. Unfortunately, GB isn’t the only country that handles this issue awkwardly and inefficiently. As I’m sure you’ve heard, it can be awful getting potentially effective treatment for RA because the insurance companies hate paying the high prices for the meds. People end up not being treated efficiently and sometimes, they end up with no treatment at all. And of course this costs everyone — and not least the poor patient — far more than a competent diagnosis and prompt medication with drugs that have a higher potential for success might have.
We live in an imperfect world, I guess. All we can do is keep squawking, loud as we can, so that those with the authority to do so will make changes for the better. Thanks for a great post, Polly. :o)
You know, I thought while I was writing it that I probably should send it as a letter to NRAS, but they don’t actually have a letters page! (Odd that, but there you go) Glad you liked it – it would be nice if all these different organizations could join up the dots on guidance etc., wouldn’t it?
Ask for a letters page/ I’d write in there, and here, to say I squarely blame NICE for my hip and shoulder joint degradation. Doing the dance through 2 DMARDS last year, with the best and most willing rheumatologist in the world, who flung me through the process as fast as possible. And then rubber stamped my anti-TNF assessment. I mean it, didn’t even do the joint counts. Just signed the papers.
So frustrating for the clinicians. Heartbreaking for me. I’m in remission from inflammation, but can scarce move by end of busy days for the wear and tear on my right side.
These drugs work, they are the goild standard. I think NICE should trot off to its political masters and ask for some proper powers: to negotiate down unit prices with the pharmas, and not just dice and slice the budget from the spend end.