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Medical Forum / Diseases and Disorders / Arthritis / January 2005Humira - when will it be available via NHS ?
There are fairly regular reports on alt.support.arthritis of people failing Enbrel and being transferred to Humira with further successful control of their RA. It seems that NICE haven't even got round to considering Humira for UK patients yet. I was told by my consultant recently (on one day) that a couple of his patients had failed Enbrel, so I asked if he was going to give them Humira. He said that no funding was available for Humira. I wonder if that is the case elsewhere in the UK, or is this postcode again? It seems cruel to deny RA patients treatment with Humira when those in the USA are gaining definite benefit from it. If a patient fails Enbrel, it costs no more (probably less) to transfer then to Humira and at least give them a chance of responding. I would be interested to hear your views about this. Peter >There are fairly regular reports on alt.support.arthritis of people >failing Enbrel and being transferred to Humira with further successful [quoted text clipped - 7 lines] >I wonder if that is the case elsewhere in the UK, or is this postcode >again? it's available to research departments, afaict. when they were thinking of putting me on a tnf treatment[*], one of the leaflets i was given mentioned adalimumab (which is the generic name for humira). >It seems cruel to deny RA patients treatment with Humira when those in >the USA are gaining definite benefit from it. If a patient fails >Enbrel, it costs no more (probably less) to transfer then to Humira and >at least give them a chance of responding. their hands are tied by the drug approvals procedures, i presume. because i have psoriatic arthritis rather than rheumatic, they (already) made me sign my life away as part of a trial. [*] they've now given up on the idea :-(  SignatureRobin (http://www.tex.ac.uk/faq) Fairbairns, Cambridge Robin. Yes. The point I am making is that there is no sense of urgency in this country about new drugs of this sort. It seems that the government (NICE? - well he who pays the piper calls the tune) is quite happy to delay the availability of a drug developed in the UK and known to relieve at least RA, and which can provide an alternative for those who have failed other ant tnfs and DMARDs. It wouldn't actually cost any more because it could be used instead of, not in additon to, existing tnfs for which criteria have already been set. Peter >The point I am making is that there is no sense of urgency in this >country about new drugs of this sort. i fear i agree with you, to an extent. >It seems that the government >(NICE? - well he who pays the piper calls the tune) is quite happy to [quoted text clipped - 3 lines] >more because it could be used instead of, not in additon to, existing >tnfs for which criteria have already been set. the ostensible reason is that, on their preposterously relaxed timetable, they've time to run trials that will find the majority of the potential problems with the new drug. which is actually quite rational. until you observe the song and dance with cox-2 inhibitor anti- inflammatories, which i knew about (and was longing for) years before they were available here. unless we buy the conspiracy theories (that the companies knew all along and wanted to get at least some pay back on their investment), it seems that there are _real_ show-stoppers that can't be found without full-scale deployment. apart from all of which, they keep telling me there's not enough enbrel to go around anyway, which is why i've got to be more ill than i am this month, even to try it. being as how humira is an engineered protein, does anyone know about its supply availability, were we allowed to use it? SignatureRobin (http://www.tex.ac.uk/faq) Fairbairns, Cambridge Humira was licensed for EU use last year. If you can get it in Newcastle, please can you also say where the money comes from to pay for it? Nice is due to consider Humira in March 2005. The matter is discussed on the BSR website and the opinion of the rheumatologists is " In advance of clinical guidelines being available BSR believes the current evidence is strong enough to support the use of adalimumab for Rheumatoid Arthritis." See https://www.msecportal.org/go/msecportal/society/public_face_viewer.jsp?BV_Sessi onID=@@@@0318750685.1105199055@@@@&BV_EngineID=cccfadddfmkhidkcehgcemhdfmodfoo.0 &oid=536883013 for details. We are simply waiting for NICE Peter >Humira was licensed for EU use last year. >If you can get it in Newcastle, please can you also say where the money [quoted text clipped - 10 lines] > >Peter Peter, Have you contacted Abbott direct and asked about a clinical trial? or do you not want Humira on that basis? -- Andy >until you observe the song and dance with cox-2 inhibitor anti- >inflammatories, which i knew about (and was longing for) years before >they were available here. unless we buy the conspiracy theories (that >the companies knew all along and wanted to get at least some pay back >on their investment), it seems that there are _real_ show-stoppers >that can't be found without full-scale deployment. My take on history of cox 2 inhibitors in the late 90's introduced in UK also circa then NICE approval and guidence for use by GP's in UK some years later ie late 2004 the current "song and dance" which unless I'm wrong leaves a good 3 years inbetween where everyone was using them and everyone was cool with them. did I get my facts wrong? -- Andy Humira is available inuk..I am newcastle upon tyne and i have been on it since last sept >>There are fairly regular reports on alt.support.arthritis of people >>failing Enbrel and being transferred to Humira with further successful >>control of their RA. Some of us can't even get Enbrel - my LHA is one of many in Scotland which will not prescribe it on grounds of cost. Hell, we only have one rheumatologist for the entire area, and he's fairly useless. Anne >Some of us can't even get Enbrel - my LHA is one of many in Scotland >which will not prescribe it on grounds of cost. Hell, we only have one >rheumatologist for the entire area, and he's fairly useless. > >Anne I didn't think they could refuse it on the NHS on grounds of cost? Nice having approved it and thus the cost of funding. If you meet all the criteria to get it as described by nice (failing 2 dmards one being mtx, plus the test score etc). However I understand what you are saying because if your one RD has orders from above he isn't getting it on the grounds of cost, then guess what, everyone will no doubt fail the test or haven't you tried the eight other 1950's dmards yet! or even "we thought you had TB as a child, is that incorrect?"... Anyway, good luck with whatever you manage to get. -- Andy >>Some of us can't even get Enbrel - my LHA is one of many in Scotland >>which will not prescribe it on grounds of cost. Hell, we only have one [quoted text clipped - 3 lines] >> >I didn't think they could refuse it on the NHS on grounds of cost? Nevertheless, several LHAs in Scotland have refused. I thought initially it was only my area, until I got a call from an ARC researcher (I'm a member and have helped with previous research) who was desperately trying to find *anyone* in Scotland who had been prescribed Enbrel. At the point where she spoke to me, she had tried almost every Scottish LHA in vain. This was around June last year, but I know the situation hasn't changed in my area, and I haven't heard of any others who have as yet. >Nice having approved it and thus the cost of funding. If you meet all >the criteria to get it as described by nice (failing 2 dmards one [quoted text clipped - 3 lines] >fail the test or haven't you tried the eight other 1950's dmards yet! >or even "we thought you had TB as a child, is that incorrect?"... Well, on the TB bit I would probably strike out - although I've never actually had it, I did have to have an x-ray after the BCG jab at school. My mother was a nurse in a TB sanatorium in the 30s and 40s, so it may be some sort of inherited antibody reaction or something. >Anyway, good luck with whatever you manage to get. Thanks, and the same to you, and all others. Anne I have it I start in about 10 days > I have it >I start in about 10 days > >> I have it As some of you may know, i've been on Humira since 2003 (i didn't believe it was that long either, but thats what google groups shows me) and as far as i know, the actual trial in the UK ended late in 2003/ start 2004 The problem being that the NICE appraisal is still in progress (http://www.nice.org.uk/page.aspx?o=207026) Those that took part in the trial and where Humira was seen to have been successful with no side effects were to be allowed (according to my Consultant) to stay on the drug even the drug was not released for general use, or have the option of doubling the dose to once a week and stay on for another trial period. A thread i read here (http://www.fertilityfriends.co.uk/forum/index.php/topic,19602.0.html) mentions prices and seems around the same as i was told, "about £10,000 per year per patient) which although i don't know how this compares to enbrel etc, is bound to be a factor in the lottery of getting prescribed. The key qualifying facts as expressed to me, were that the patient has failed to respond (or ceased to respond) to conventional RA treatments (DMARDS i think was the main) to the point of the patient being absolutely knackered (basically). However, DMARDs (disease modifying anti rheumatic drugs) i.e. Methotrexate and Humira, seems to be the route mostly pushed for as in combination therapy. I desperately want to get off MTX but the consultant won't budge and argues why mess about with it all when it's currently working. Scoob Looks to me as tho the qualifications for Humira as stated by Scoob are much the same as for Enbrel and Remicade. Regarding the Scottish lack of provision of Enbrel. I also understand that when NICE recommend a drug all local PCTs must make it available to patients in their area (does this only Apply to England and Wales ?). If anti-tnfs are not being provided as they should be, then there are grounds for an approach to local MPs, NICE, patients groups, and anybody else who can see that justice is done. TB. If you look at the chat by people in the US you will see that having had TB is not a disqualifaction per se. In the US they usually put people on a course of (forgotten the name) an anti TB drug for 9 months. Then if tests are negative they start taking the anti-tnf drug. Post code provision of drugs is unjust and unfair and it should also be illegal. If the NHS provides it in one area, it should also do the same elsewhere. Finally, I don't know to what extent the Scottish NHS is devolved, but I suppose this might affect the provision of drugs. Peter >Regarding the Scottish lack of provision of Enbrel. I also understand >that when NICE recommend a drug all local PCTs must make it available >to patients in their area (does this only Apply to England and Wales >?). A snippet from the NICE website Peter: The National Institute for Clinical Excellence (NICE) is part of the NHS. It is the independent organisation responsible for providing national guidance on treatments and care for people using the NHS in England and Wales. __________________________________________________________ So in summary for the Geography students amongst us: Great Britain = England Scotland Wales United Kingdom = England Scotland Wales & Northern Ireland The "NATIONAL" Institute for Clinical Excellence = NHS England & Wales and I find RA baffling enough, I'm never going to get an A grade in geography........ -- Andy > Looks to me as tho the qualifications for Humira as stated by Scoob are > much the same as for Enbrel and Remicade. [quoted text clipped - 19 lines] > > Peter Ah yes, the TB test- When i started the trial and had the PPD (?) test for TB, there seemed to be much of a to-do about my results. I didn't think it looked positive, the Trial nurse said it was, and my consultant was trying to convince all and sundry, "of course it's positive - he had the TB jab when he was a teenager." After much deliberation, (and phone calls to Germany), the general accepted theory was agreed that i should test positive, having had the TB jab when i was at school. Having said that, they did say at the time that being positive just meant a course of treatment prior to going onto Humira. Presumably the procedures have improved a bit since then and they realise that people having had the TB jab, should be positive :-) And in response to Andy who mentions Geography, i'm proud to say i got my only GCSE in Geography but only due to being seemingly good at coloring maps in. And i got lost going from Scunthorpe to Doncaster! Scoob >And in response to Andy who mentions Geography, i'm proud to say i got my >only GCSE in Geography but only due to being seemingly good at coloring maps >in. >And i got lost going from Scunthorpe to Doncaster! > >Scoob LOL In which case if you're thinking of traveling abroad go via Humberside Airport or the ferry at Hull and not the new soon to be opened Doncaster Airport! -- Andy |
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