Comments on: NICE fiddles while RA burns a hole in the economy and our joints

By: SynovialSensation

SynovialSensation — Sun, 31 Jan 2010 06:46:22 +0000

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.

By: pollyannapenguin

pollyannapenguin — Sat, 30 Jan 2010 22:05:59 +0000

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?

By: pollyannapenguin

pollyannapenguin — Sat, 30 Jan 2010 22:03:48 +0000

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.

By: Wren

Wren — Sat, 30 Jan 2010 17:05:05 +0000

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. )

By: Laurie

Laurie — Sat, 30 Jan 2010 13:11:18 +0000

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).