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Infliximab (Remicade) funding in jepoardy in UK


ele mental leprechaun
Hi Folks,

I got a letter yesterday evening when I arrived home from work.. It came from my gastro nurses and not what I wanted to read when feeling rubbish with starting Methotrexate yesterday either!

It reads as follows:


It has come to our notice that the National Institiute of Clinical Excellence (NICE) are about to recommend that Infliximab treatment is to be used for symptomatic relapse only, i.e. when you have a flare up of your Crohn's disease rather than at regular intervals in order to prevent your symptoms recurring in the first place. This, of course, is unacceptable and completely negates the whole purpose of treatment and effective management and it is likely to lead to an increased incidence of hospital admissions and disease complications requiring surgery thereby significantly increasing management costs compared to the costs of Infliximab treatment. We do not know when an absolute decision will be made but the Primary Care Trusts (PCT's) are, on this evidence, likely to refuse to continue to pay for your treatment.

We now urge you to contact NICE directly via their website (www.nice.org.uk) and voice your concerns detailing the personal effect this is likely to have on you and your current quality of life. It might also be worth taking this point up with your local MP and with the National Association for Colitis and Crohn's Disease (NACC) if you are currently a member.

We do not have any further details at this stage as the document is out for consultation with the various special interest parties but we will keep you informed of any news as soon as it is available to us. We would like to reassure you that your management team is trying to do all it can at present to affect this decision.

Yours Sincerely


IBD Specialist Nurse

I was so tired last night I just couldnt take it in. I have FOUR consultants (dermatology, asthma, rheumatology and gasrtoenterology) that believe the remicade has made dramatic changes in my life and I agree with them totally.

I cannot believe NICE cant see the impact financially this will have on the NHS down the road despite the current cost of the drug for regular infusion! I will fight this all the way as much as possible and am very worried I will loose my one med that has dramatically changed my life. I cannot and do not want to go back to my previous situation at any time never mind earlier than I could possibly be thanks to beurocracy and red tape and folk sitting behind desks playing God with folks lives having never had a days serious illness in their lives!
arghhhh just started remicade last week and its done wonders for my crohns as well! ive never felt better and now this!! i really can't believe this and can't understand it either if im quite honest. im really worried by this now, i can't afford to miss any more school :ymad: :ymad:
Can you not just pay for it yourself? That's what we have to do in the US. I'm sure there's supplemental insurance available in the UK too.


ele mental leprechaun
There has been a whole row raging here over other drugs that NICE or PCT's wont fund i.e. for cancer and alzheimers patients but if they have funded it themselves have not been allowed to continue any other care within the NHS they are told they must fund EVERYTHING. The row has been about a 2 tier system when the whole idea of the NHS is that it is free at the point of delivery.

On the insurance aspect folk who pay privately for surgery for instance in the hospital where I work have exactly the same consultants, nurses, physios etc etc and the only difference is they have pale green bedding, a room on their own (not necessarily en suite) and a different/posher menu to choose from. Why pay for that if the care you receive is identical to those who take the NHS route? Apart from the above mentioned things they MIGHT (not guaranteed) have their op a few weeks earlier.

I know how you feel Amor about being worried about this development.. if I find out any more will post it here. The hospital I go to for my Crohns and other health problems are a main centre for research and are a leading centre in the UK. All my consultants except rheumatology have been able to cut back on my meds including high strength steroid creams for my skin, extra meds for my asthma because the infliximab has had such an impact on both fronts. Fingers crossed NICE see sense.
Well the advantage I was thinking of to paying for it yourself wasn't nicer stuff, it was remicade or no remicade.

Though are you saying that the NHS covers all or nothing? They won't just pay for as much as they're willing to and then you can pay for denied additional drugs if you disagree with them and think they're necessary?
im having my second infusion tomorrow i just hope it wont be my last one on the NHS! yeah thank you jan and information you get would be greatly appreciated.


ele mental leprechaun
I know you werent thinking of the "nicer things" Colt. I was merely pointing out that insurance here doesnt do much for folk in relation to better treatment or on the scale of being able to pay for things either via insurance or out of your own pocket because of how the NHS is set up.

And yes you are right it is either remicade or no remicade on the NHS on their terms because of the info I mentioned earlier! Nice pic by the way Colt.

Amor, I saw my GP this evening and he isnt one bit impressed either. He agrees it has been the only med left to me on the crohns front due to others impacting on my asthma for instance. He said he didnt think it would happen soon but could be on the cards so we need to fight and make sure our voices are heard as patients on it.

I will send my concerns/thoughts/complaint to NICE at the website above. I guess the more who register on this aspect the better. Time will tell eh?

I am going for my next infusion on Tues next week so if the gastro nurse comes to see me I will quiz her some more about it.

Hope your infusion goes ok tomorrow. Thinking of you! ((hugs))
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BTW insurance doesn't get you nicer things here either. They usually won't pay for anything but the bare minimum which is what they would have given you with no insurance. You don't even get green sheets. It's just a matter of you get a treatment or not when it comes to things beyond the absolutely necessary. Nice stuff just comes from being wealthy and being able to pay for the nice things out of pocket.

You should know by now I'm in full support of the NHS covering anything your doctor thinks you need. I'm just curious about the differences between here and there. Good luck, and remember you can always start a violent revolution and install a new entity called MEAN (Medication Everywhere Anything Needed) to replace NICE.


ele mental leprechaun
Colt I never thought insurance got you the nicer things "over there". At the end of the day insurance is supposed to help you get the treatment you NEED no matter where you live in the world. Unfortunately, at the end of the day as always with such things there is alot of "red tape" and beurocracy in the way of each individual trying to have decent treatment and quality of life as a result. That is the frustrating thing for all eh?

I appreciate your comments about the NHS etc and your quantifying your thoughts along with your well wishes.

I hope things work out for you too.
infusion number 2 out of the way and all is good :) i really hope they dont stop paying for this drug. hope your infusion on tuesday goes well jan.