Humira/Adalimumab in the UK

[beth]

Talking to my consultant this afternoon he mentioned he and his colleagues are having to justify to the PCT's exactly why a patient should have a particular drug. Each one of us on Humira is, or is going to be, continually reviewed and some are going to be asked to reduce their dosage levels. Some PCT's are requiring justification forms for each and every dose - i.e every injection/tablet/infusion - (not sure if this is specifically Humira, Remicade/Infliximab, or other drugs as well).

If you are thinking of moving, as we are/were, his advice was don't. Or if you really have to, move to near a big centre of excellence because the postcode lottery is alive and kicking, and'll be kicking even harder. Thanks to the Tory cuts the PCT's are being squeezed harder than ever.

If you are not on Humira/Remicade; then count your lucky stars/beads/voodoo-dolls/etc, or pray to your deity of choice that you don't run out of the other, cheaper, options.

PCT = Primary Care Trust - the regional people with the purchasing budget.

 

[Nica]

ahh sounds like healthcare in the US. The doctors have to justify costs to bean counters. I am sorry you are going through this.

 

[littlemissh]

Does anyone know how much humira/remicade cost ? At my next appt I am to be started on maintenance therapy ( now on liquid diet and pred for 2.5 months). Azathioprine has been mentioned by my local consultant, infliximab etc has been mentioned by gastro cons at st marks in london.
I believe studies show better results if start with biologics earlier if treatment naive...but NICE say can only have if other meds failed. Wondered how much it would cost to fund personally..probably a ridiculous amount of money...

 

[Welsh-bird]

Hi Lillemissh,
I'm currently fighting for the right to Infliximab, and looked into the cost and was last told that it's approx £1200-1400 per infusion. Can now understand why NICE are so reluctant to allow the treatment if there are cheaper alternatives available. Good luck with whatever drugs they start you on.

Beth,
Thanks for this info, certainly looks as if my fight for Inflix may well be over now. Hope you're keeping well,

Andrea

 

[littlemissh]

Thanks welsh-bird.
Good grief...thats expensive but think of the amount it costs to keep us in hospital/ iron infusion, liquid food supplements etc. I must have cost a fortune recently.!

Alternatives may be cheaper short term but probably not long term...but I suppose the NHS is not a bottomless (excuse pun) pit.
I'll find out after xmas what leis in store for me...

 

[beth]

First things; there isn't a ban on the biologics. Just paperwork. So far.

To get the biologics NICE says you have to go through the others at last some of the others: steroids or liquid diet like Elemental, 5-ASA's, Azathioprine/6-MP, methotrexate, and either not tolerate them or continue to exhibit active severe Crohn's to go on to the biologics. I'm not sure whether UC qualifies, IIRC back when I was being diagnosed my consultant said there wasn't much practical difference and it pays to have your paperwork say Crohn's.

Humira/Adalimumab I believe is around 400quid a pen, making it between 10 and 20k per year.
Remicade/Infliximab is more, about 30 - 50k a year.

My consultant did say they, Addenbrookes, have started to put people on the biologics sooner as the effectiveness of treatment far outweighed the cost of the drug. Simply put they keep more people out of hospital for longer.

Welsh-bird; it may be different for you being in Wales.

There is a ***** of light in this as Scotland is different. NHS Scotland is not controlled by Westminster directly some of their purchasing and prescribing policy is devolved. They are not subject to the shenanigans described above. However, and it's a biggy, is that they may be in the sheet anyway because Scotland PLC is starting to struggle paying for the political decisions it made only a few years ago; like free care for the elderly, and free prescriptions.

I'm doing really well on Humira; absolutely blooming marvelous! I want to move to Scotland, but I'm afraid if I turn up there and say 'hey I live here now, give me some Humira' they'll show me the door. Like they are threatening to charge students from England studying at Scottish universities the rate they would pay in England.

 

[littlemissh]

Addenbrookes level 6 eh...my home for a while

 

[beth]

Yup, you local? Only visited the HQ, as it were, twice when sorting out the Humira. Otherwise it's been Clinic12. Well apart from the time I went in through A&E but I kinda like to forget about that.

 

[littlemissh]

Localish- south lincs/cambridge border. More local than scotland !
I try and consign all hospital stays to the depths of my mind never to be remembered again. )
Just looked at the new NICE guidance and looks like as long as you are responding then they recommend you can stay on Humira so it would seem unlikely any PCT would try and stop it..its starting that may be more difficult.

 

[doms243]

hi I'm doms, I have been on humera for two years, and yes doctors have to justify why you should be on Humera, because its 125,000 New Zealand dollars and have to apply for special funding, One of the major effects of humera is infections, and you need be aware of your blood counts, meaning White Blood Cell count if it goes to low your doc will take you off it because your body will not be able to fight infections it could result in a severe chest infection, The protocols for going on this drug in New Zealand are same as the UK. hope that helps you I have had Chrons for 10 years have had 5 bowel resections, and I have feeding tube as I can not tolerate food any more, but makes stronger and more determined. I have to go off humera due to a major infection and need surgery, my body immune system is highly compromised and I am struggling to the whole healed, I am nothing now and I am going backward at the moment.
If you any questions let me know I want to help if I can ok see ya

 

[doms243]

Does anyone know how much humira/remicade cost ? At my next appt I am to be started on maintenance therapy ( now on liquid diet and pred for 2.5 months). Azathioprine has been mentioned by my local consultant, infliximab etc has been mentioned by gastro cons at st marks in london.
I believe studies show better results if start with biologics earlier if treatment naive...but NICE say can only have if other meds failed. Wondered how much it would cost to fund personally..probably a ridiculous amount of money...

Hi I'm doms from New Zealand it costs about 125,000 a year it is the latest drug out, for chrons, and is used if the other drugs like infliximab and other immune suppressive do not work, then you get the funding for it, I have been on all the above meds you have mentioned and None of the above worked for me However there is a danger of getting major infections with humera your immune system is highly compromised. this can be fatal.

I have had a major infection and had to come off humera until the infection from having a bowel resection went horribly wrong the whole in my stomach right in my stomach muscels, my disease has now come back and I am struggling I have had so much surgery that I can no longer eat food and I feed through tube, for nutritional needs, if I can help in any way let me know If can help I will from doms. Ps the drug humera is manufactured in Germany they produce the best pharmaceutics in the world.

 

[beth]

Firstly doms the disease is spelt Crohn's, because it is named after a Mr Crohn. There is a large logo at the top of every page if you an aide memoire. You should put an introduction into a new thread in the Your Story forum as this will get your post the most attention.

A quick google suggests Abbot manufacture Humira in Puerto Rico and have done since 2007, they may make it in other parts of the world too but that is apparently the main facility.

 

[doms243]

Doms here welcome everybody to 2011 hope that this year will be better, after been off humira for six months I have gone back on it, I started two weeks ago and I am feeling so much better, I have all so found that healthy inner plus which is natural and is sold in pharmacies and natural health stores have made a huge difference, I am hoping that I am going into remission, and present I am on oxy norm elixer, liquid pain relief and use Panadol Oxy which is a long acting paracetamol. it works real good, I also feed throught a tube a night which seems to be keeping my nutritional needs at bay. Humira is the only drug that I found that makes a difference for me I have crohn's disease for 15 years have had about 9 bowel resections and have tried all drugs that have been available in the last 10 years and know I have just been told that I will not be need another bowel resection as the humira is working real well, I get this funded in NZ but I had to approach the government health for funding for it, I am so glad I did as I feel this is the wonder drug for me the cost is around 125,000 per year I am so happy to get funded under our NZ health system. if any one has any questions let me know I will help you if I can

From doms

 

[beth]

Hi Doms, do you have anything to contribute to this thread about Humira in the UK? or are you just going to keep introducing yourself on inappropriate threads...

 

[doms243]

hi it seems its really hard to get humira in the Uk, I am sorry for the introductions I am kind getting use to using this site sorry for the inconvience, can I ask what biologics are? I am not sure what biologics are. I am back on humira here in New Zealand and I am doing so much better at the moment, its seems that it must be really difficult to get the drug in your country, I would like to learn more about the issues you have in the UK I would like learn about what its like for you living with the disease its sound like it real hard to get treatment there tell me more about the UK

 

[Astra]

Dom, in this thread, go back up to the 17th December 2010, and you will read the criteria for the biologics in the UK, it's not difficult at all, but we have to adhere to certain criteria.
Biologics are what you're on, Humira, Remicade and Cimzia
It's not too hard to get treatment here in the UK, or medication for that matter!
We're not a third world country!
What's it like for me having this disease?
Like everyone else in the world I should think! CRAP

 

[rob72]

Im from scotland, i remember 2 months ago my ibd nurse mentioned that the doc was going to review every patient on infliximab (ive been on for 3 yrs).

My first thought was, govt spending cuts, but after my last visit to the consultant he never mentioned it. (phew)

p.s. now free prescriptions in scotland, even if you can well afford it, which i think is a disgrace.

 

[Kazters]

its apparently much harder to get humira in england than it is here in scotland which is unfair

also its a great thing persctiptions are free for all after all the NHS is free at the point of contact i work but perscriptions were 7.00+ per item i get at least 8 things when i go i cant afford that. Also we use our NHS budget well here our parliment worked it out and decided they could afford this as did the other deviled pariliments,

sorry i am just sick of people complaoning that we have it free there is no reason why the london parliment cant do it for england too.

 

[rob72]

what does a doctor think of first and foremost.

patient or budget ?

 

[littlemissh]

patients. they are not government monkeys despite what some people may believe, most are there because they enjoy making a difference and hate the restrictions placed upon them.

 

[JoeUK]

Hi all, just pondering whether to start Humira or not if I'm going to move around the UK. Has anyone experienced difficulties moving to a new PCT?

 

[rob72]

its apparently much harder to get humira in england than it is here in scotland which is unfair

also its a great thing persctiptions are free for all after all the NHS is free at the point of contact i work but perscriptions were 7.00+ per item i get at least 8 things when i go i cant afford that. Also we use our NHS budget well here our parliment worked it out and decided they could afford this as did the other deviled pariliments,

sorry i am just sick of people complaoning that we have it free there is no reason why the london parliment cant do it for england too.

Free script's are indeed a great thing, but surely it should be means tested !
Alex salmond worked out it would be a great thing (vote winner). Funny how the snp announced this policy 2 weeks before the scottish election.

 

[rob72]

patients. they are not government monkeys despite what some people may believe, most are there because they enjoy making a difference and hate the restrictions placed upon them.

I believe they are under pressure to 'streamline the nhs' as a politician would say.

In the real world its called 'savage cuts'

 

[BelperFlyer]

Withdrawal of Humira Treatment

I have been on Humira 2.5 years and these were best years health wise for many many years and then had treatment withdrawn earlier this year due to the revised NICE guidelines ie I showed no symptoms of my Crohns so was no longer eligible

Doc said at time his hands were tied and fully expected me to flare up. 3 months later inevitable happened had abscess crohns flared and fistula has opened up already had one op and 8 days in hospital and another op planned for next week

If you are facing pressure from your doc to stop treatment FIGHT HARD

I have asked my consultant for research to be done on relapse rates following withdrawal from humira.

I am now back on humira but have been told it will be reviewed in 18 months the PCT will have a major fight with me if they try and withdraw it then

 

[StarGirrrrl]

Doctors care about patients but they do not handle the budgets... which is why I cautiously welcome suggested reforms to take power away from PCT's and give it to the Doctors. Then I would get one or 2 tests I need that Dr wants but PCT won't fund!

 

[beth]

That's disappointing BelperFlyer, to hear some of the PCT's are actually taking people off despite the obvious inevitable consequences.
I have had a few phone calls since this thread started with my IBD nurse where she has heavily pushed me to reduce the injection frequency but I countered similarly forcefully that would result in me falling out of remission. Glad I fought back!

 

[Mark63]

If it's working you need to stay with it. This is my second go at Humira as the PCT originally withdrew funding, not for clinical reasons. It worked brilliantly the first time, but this time the benefit, even though I'm now on a weekly dose is not as great as before.

Mark

 

[beth]

Mark, so the PCT simply withdrew funding, not on your doctors advice?

Do the likes of NACC, or whatever they are called this week know and are they doing anything about it I wonder....

 

[beth]

Bloody hell (excuse the language) I've just found this statement on the NACC site:

http://www.nacc.org.uk/downloads/media/NACC_statement_antiTNFs_4_March_2010.pdf

Does this strike anyone else as outrageous? It'd be like giving someone with epilepsy drugs which work, and then taking it away again a while later and seeing if they have a seizure!

 

[Mark63]

This is a while ago now and I was not a member of the NACC then. My Gastro consultant at the time told me that all funding had been withdrawn from his patients that were receiving Humira or Infliximab. He saw this as a part of a game that they were playing to get patients who required more expensive treatment referred to the regional centres of excellence. For me that was UCLH as I was already under the care of the Surgeons there.

The end result was a break of more than a year in drug treatment due to the referral process and then still having to appeal the PCT's initial rejection for funding out of UCLH. It went through eventually, after much letter writing by the Hospital, GP and others. I received a copy of the PCT's letter approving funding and it stated that they had never refused to fund my treatment. This of course was a lie and I wanted to take them to task over what they said, but was advised not to as I now had the funding and that upsetting them could make things difficult in the future.

If similar problems arise in the future I'll be tougher. I'm older and wiser as to how the game is played!

 

[beth]

Blimey. Just what you don't need at a time you are ill.

 

[Mark63]

Exactly what I thought!

 

[Mapper]

Gosh, now I'm getting concerned! I just joined the forum because I saw this thread! I'm having a hard time navigating the NHS.

I moved here from America a year ago. I was on Humira for 5 months before I moved, and I brought a supply of Humira with me and was able to stretch it out 4 more months before I ran out. I LOVED Humira, it was like I had never had Crohn's ever!

By the time I got to see a specialist and got a colonoscopy, 3 months after I ran out of meds, I was flaring again (duh!). So then another month passes and we try Imuran, I develop debilitating side effects, stop the meds, wait another 2 months for an appointment, try 6MP, more bad side effects, wait another 2 months for an appointment. By now I'm in pain all the time from the Crohn's, but I had been told that it's not very likely to get the Humira because I'm sick, but not sick enough!

Now we are on to methotrexate and they also gave me a short course of Pred to cool things off, but now that I've tapered that, the tummy is grumbling again. I've been taking the Methotrexate for 5 weeks with no side effects, but it isn't doing much yet for the Crohn's. The GI specialist is sounding a little more hopeful that I may be able to get Humira after all, we are just waiting to see if the MTX works or not, I guess.

I understand why we have to go through the PCT for this, Humira is expensive, and frankly, I would be happy to take Imuran or another less expensive drug, if it worked for me! I'm just getting so discouraged with the whole thing. Fingers crossed I get something that works.

The thing I find most aggravating is the loooong wait between appointments with the specialists. I'm sick and in pain, but I'm not spectacularly ill, so the appointments are booked non-urgent. It's hard to get used to, when in the US, I could call my GI up and either talk to his nurse on the phone, or they could get me an appointment within a week. Should I be making a bigger fuss? My immigrant status makes me hesistate, and I'm just so new to the system, I'm not sure if there is anything else I can do! Any words of advice would be welcome.

Sorry about the longish post, but thanks for letting me vent!

 

[Mark63]

Hi Mapper,

Welcome to the forum, I'm sure that you will find plenty of help and advice on here. I wonder if it's worth introducing your self in the my story section as I'm sure that there are other immigrants who have been in a similar situation who could offer specific advice.

Yes the NHS is a great institution and the medical practitioners are for the most part highly competent and truly care about their patients.

The delays are something, that you generally have to get used to. However, some delays are brought about purely by the administrative staff doing what they consider to be their job, but with little regard as to what their decision mean for the patients. If you feel that's the case and you have a genuine medical need, then do not be afraid to contact the consultant's PA or your teams IBD Nurse and explain the situation. Either of these should be able to get you rapid access to medical advice and/or organise an appointment at short notice if required.

I wish you well.

Mark

 

[beth]

Mapper: yes, introduce yourself in the "Your Story" forum.

As for Humira here, I'm afraid we've all had to try the less expensive drugs first. The doctors have to follow the protocols set down by NICE - the organisation that lays down the rules as to what drugs and how/when they can be used. The PCT's decide where and how the money is spent in local hospitals.

 

[Spooky1]

having read this thread, i am amazed that Humira has worked well for all of you and that your Crohn's goes into remission. i tried it for 9 months but my throat would swell up for a fair few days after injecting. i have also coughed badly ever since i started it. i'm pleased it works so well for you, but admittedly, i'm rather jealous!!

hope the NHS allow you your freedom from Crohns and don't cut it.

 

[Carrie]

Mapper, it's not impossible to get Humira here--especially assuming you are seeing a consultant at Kingston Hospital. After living here long enough to finally get to see a consultant, it only took me a few months to get onto Humira since I had been getting it when I was still living in America.

You may have to be patient, but it is possible.

 

[eagel]

Hi
I noticed all the reply here go back a few years and things have changed a lot, so can any body tell me of recent experiences of getting humira in Scotland on the nhs?
i am on weekly injections an live at the moment in wales and i am thinking of moving to the highlands in Scotland.
how difficult will it be, or will they just continue with out a delay by transferring records?

Thanks