How to get Funding for Infliximab on the NHS?

Hi,

After being turned down for funding for Inflixmab not because I'm not a suitable candidate but because there is no funding has anybody idea how or where I can get it from free of charge or subsidised? 

Aza, Metho, has no impact, I also have related inflamatory arthritis in pretty much every joint and tendon and of course NICE / PCTs have deliberately altered the criteria for funding as typically the arthritis UC sufferers get doesn't indicate very much on inflamatory markers in the blood which is a major points scorer for being allowed Infliximab for arthritis..

So here I am, my doctor won't refer me to a hospital (as I've already had 2 referrals) where I know that somebody has been able to receive the treatment as a mainteance therapy and not just a one off emergency or acute infusion (deemed appropriate to help give the patient time to come to terms with bowel removal). 

OK I could get admitted into hospital easily done with a double figure daily bowel movement, blood and mucus but it has been advised if you don't undertake a full course of infliximab treatment the body can sometimes reject further doses should you ever be able to get funding.

I've even moved addresses so that I can try another PCT this time North West London but again the doctors won't refer or the same consultant wont' reapply...My consultant did however refer me to a surgeon which I agreed to just to get the low down on whats involved but his English was so bad I ended up finishing his sentences for him any way after talking to his boss they informed me that I'm likely to be left with a permanent stoma as it appears my UC has affected the whole of my rectal area so a pancolonectomy is reqd. so now where to reattach.

I am so desperate to try to get Infliximab that I'm currently in Spain trying to get the treatment where it is widely avaiable with no  questions asked just that you have haven't responded to the more common treatments first.  However it appears that because the NHS won't approve funding for this drug in the UK you are not allowed to have it Spain, anybody have any ideas what I'm supposed to do now, I'm so upset and angry, I've been a net contributor to the NHS all my life and look how they let me down when I need it most....

Sorry for the rant but if anybody can offer any help, either to get the treatment in the UK or abroad please let me know.
Many thanks in advance.

Okay I just read up on the UK forum and it looks like a few of them are on infliximab. You need to speak to these people. And what exactly is the NICE policy on UC and remicade - it doesn't sound like these patients had to apply for exemptions etc?

Thanks for replying...

your not going to like this reply....the surgeon was from St Marks, they are not coping very well these days, very long waiting lists etc I do have a really nice medical registrar though who has tried to request and then appeal the funding decisions of my local PCT (Croydon).  You wouldn't believe just how bad the NHS is now, the most expensive/Largest health system in europes, 4 largest employer in the world and its a third world service right from GP through to consultant to available medication..

 

My only option is to compile all responses between doctor and Trust and do a personal appeal to the care trust but this will be in vein.  For NICE (or not so nice) only recommend one off treatment of Infliximab for acute colitis i.e. when you are hopitalised and then only when surgery is iminment and just to give you sufficient time for the operation not to be performed in a hurry..  Somebody suggested writing to my local Member of Parliament who probably has private medical care anyway :)

I knew of somebody's son who was being treated at another hospital with maintenance doses of Remicade and who is confident they are going to get this renewed maybe he has friends on his local Oxfordshire PCT but as I mentioned before my GP won't refer me there, he promised to ring to see if they were doing trials and of course he hasn't got back to me that was a week ago now..When I get back to the UK I'm going to another GP in another county to try to get referred...that's taking a week just to get an appointment to register.  Which country have you gone to you are so luckily not to live in this one :)

I was going to try using the EIHC medical card in Spain on Monday to at least get to the hospital consultant and then try to see my other options not so easy in another language but I'm in the country now.

Thanks

Well that sucks. Why are all of those people on the UK colitis forum getting infliximab so easily then? Some have been on it for years, others have stopped and restarted again? It seems like the medical advice on that site indicates that it is available but it's more of a postcode lottery issue it appears? That SUCKS. I'm so sorry you have to deal with it.
As for the surgeon being from St. Marks????? Really? I have friends treated for UC there including some who have had surgery and they have nothing but the highest praise for their docs. So, maybe someone on that forum can refer you to another surgeon in your area.
As for the EIHC card, I think it's mostly for emergencies if you're travelling but like you mentioned your home country has to agree to pick up the tab (ie they must offer you that service at home so they will off it to you when you are in the EU)? Good luck with the meeting though - do you have anyone with you who could translate?
Another idea, there's a really funny guy who had UC (now has a ostomy or jpouch) who writes a blog called "number twos". Look it up or one of the other london bloggers on his roll (this guy lived in Highbury and Islington at the time). He had infilximab I believe but definitey had very good results with his surgery I've heard.
Good luck to you.
ps I moved to Canada. I absolutely love London but I have a child with UC and though we had a chance to move back this this fall we decided not to because of the NHS postcode lottery and they way it's going to be destroyed by the current government (after the PM praised it for caring for his son during the election. disgusting. anyway, that's another rant). ...

Thanks KillColitis;

Don't get me wrong the NHS does the basics reasonably well and is staffed with some great people but the world is full of new, modern medicines that it just refuses to make use of or severly limit to the lucky few. You absolutely made the right decision not to come back to London its great for enterprise and making money but the moment you have to rely on the state to help you out i.e. health forget it; long delays, lack of access to meds....

I've been hospitalised twice and on both occasions had to fight to get my prednisolone every 4 hours, I even had to go to the hospital pharmacy myself and make sure they brought up enough stock for me otherwise the nurses would run out as they wouldn't order in advance for the weekend, if I went to have any kind of procedure and missed the treatment it was a constant battle to get my pred injection just awful (Croydon's Mayday Hospital), I have many other awful examples I could site its ironic really you have to be strong in hospital or they just forget about you...

I had a look at the No.2 blog it is entertaining but it reafirms my desire not to have the operation as even with his bowel removed he was still taking mesalazine, azathioprine for remaining disease on the part they left behind, I guess for reconnection...plus dealing with his stoma bag....Which just proves my point bowel removal isn't always the end of it, as I mentioned before what about inflamatory joints etc. He doesn't mention ever having infliximab he probably didn't get the option, when your'e really ill you just don't have the energy to battle with the doctors for the available treatments...by the way nobody ever volunteered or mentioned inflximab first it was always me that specifically asked for it..

Anyway many apologies for my moaning its not very often I can speak about my frustrations like everyone reading this often we have to keep quiet and put up...

Oh I can speak a little spanish, I've translated all my medical conditions and medicines ready, "tener Brotes" means "to have flare ups" the worst word "gastroenterologico" you can guess that one, "IBD" is "EII" enfermedad inflamatoria intestinal" I need to work on the pleading grovelling words, people here just can't believe just how bad access to medicines are in the UK..

hiya there. Im a bit concerned since I read your post.
Im a canadian national and just moved to the uk permanently.
I don't know any of the NHS system though i had very good experience so far with GPs and clinics.

However no experience with hospitals here. I have my frist appointment with a GI from the lewisham hospital on thursday. Im a bit nervous as i will surely have scopes and many tests so the doctor can build a file and look himself my condition.
Im still on the melasamine (asacol pills and enemas) so im still at the basic meds. But just learned last week the enemas arent available in 4g in the uk only 1g or 2g.

Is there less choice of meds in the UK regarding uc? Hows the uk keeping up with the meds options?

thanks

I'm not condeming the NHS you have access to the cheaper regular drugs but clearly when it comes to expense last chance treatments the majority do not have access, how much trying are you expected to do I'm on my second PCT, third hospital still with no funding, if I go to the US with no state health service I am likely to get subsidized treatment through various means even from the makers of the drug but not here. So you tell me that's a world class system, of course it is compared to many countries but not to our European neighbours who run less expensive better managed systems. So how many UK hospitals are rated best in the world, you will be shocked, none. Go Google it. Nobody has volunteered any info on the other site, are they worried about disclosing their source of funding, you bet.

KC, I wish you and your child all the very best. Personally theres only one thing worse than me having UC it would be for my son to develop the disease. I imagine youre exhausting all the dietary options I often use the supplements and shakes from caramel holistics they do help to rest the bowel and provide good nutrition at the same time, take care and let us hope we all can carry on coping with this nightmare, ps. I came back to london yesterday and wot a cold, noisey, miserable place it is, I'm trying to make you fe el better by the way;)

smillalot,
Yes we've tried all of that stuff, and I mean all. Yes, when I miss it, I remember being punched in the stomach while heavily pregnant at Tesco, frightening arguments on the bus, drunks pissing on my front door day and night. Then I don't miss it as much!
Good luck to you and keep us posted.

Hi Luna, Sorry, I might be wrong in that case. But I've been told that rectal sparing is reason to dx CD an not UC. Perhaps you can start another thread and see what others have to say? I've always been told UC always includes the rectum, never the anus (CD) and is usually worse distally? I guess trust your GI because things are not always so clear cut it seems (that would be too easy)!

Luna,
Thanks for the explanation. The thing is I don't know if they really know? I know there are guidelines but they are not set in stone. Anyway, I'm no GI so go with what your GI says!
Best of luck...

I hope the same thing for you and for us! We are in the same position...

I did not mean to stress you out! I am truly sorry, I know I've been driven into a panic by posts I've read on forums. Your GI will be able to explain it to you they obviously know how to distinguish between these two diseases better than I do! I was just told that rectal sparing means CD. But, it looks like you don't have that anyway.