I recently heard about a friend who has had RD for quite a few years now. She has had several operations on her feet and her hands are very damaged. It hase been decided by her Rheumy team that Methotraxat and other associated drugs are no longer working for her and are allowing her RD to spread. Her Rheumy Consultant has received word back from the NHS that it is not in position to grand funding for this woman to be put on Humira!
Does anyone else know anything about this? I know there are cancer drugs that ' are no longer available' here in the north of Ireland, now it seems Bio's, that from my point of view, as a user, are life altering drugs.
Is this just something that is going on here in Ireland or is it happening else where? I told this woman that I would ask on her behalf. She is having another meeting with the Rheumy Dept next week to see where they go from there but this is not looking very positive.
Thanks for taking the time to read this post. Jean
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Jeanabelle60
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Hi Jeanabelle, I think this would be pretty unusual in England and Scotland as NICE/ SIGN guidelines say that you only need to fail two DMARDs and still have a high DAS28 in order to meet the criteria for Biologics.
If your friend has erosions in her feet and hands that were definitely caused by RD then I would think they should have given her the thumbs up for Humira? But I'm sure others will know more about the specifics of these criteria.
I still haven't been offered these drugs myself despite being left off DMARDs for four months now so not really in a position to advise. Buif her blood results are negative and her problems are thought to be because of OA perhaps then there might be some wriggle room/ leeway for the cash strapped decision makers? Otherwise I think she should try to appeal this decision with her rheumy's support perhaps?
Thanks for your reply toes. The woman in question was diagnoised many years ago with RD, so there is no question of that. She has been on Methatraxate for some time now but it now started to show signs of liver damage. From what I can understand it was her Consultant who applied for her so by that I'm assuming that she must meet the critera. When I know more I'll post it on here.
I believe it is still possible that people who have had RD for a long time can end up suffering from OA more severely than the RD - which can sometimes burn itself out after many years? I think she needs to ask NRAS, and if possible have her most recent rheumy's letter to hand.
I agree about her being very likely to meet the criteria, although my rheumy has previously said that he would be happy to apply for me now I've tried and failed 3 DMARDs over three years, but thinks it extremely unlikely that any application would succeed at this stage because I don't meet all the criteria re DAS28.
That would be something I would be questioning more - asking them why they didn't approve the biologics. Was it because she didn't meet the criteria, or because of budget limits and cost? If it was to do with criteria, then there's not a lot she can do, except maybe get a second opinion. If its about cost and budgets, then I'd be onto my MP quick smart and letting them know what was happening.
As i've said Witch, it was here Consultant who made the application so, as far as I know, it has to be funding.
Access to biologics does seem to vary between different Care Commissioning Groups (they are the bodies that can approve or refuse funding aren't they? Will someone put me straight if not, please).
I found something online that suggests that the situation in Northern Ireland is not great on this front or at least wasn't in 2012:
Your friend has the option of getting a second opinion from a rheumy who might fight harder on her behalf. Although from the way you've put things, it does sound as if her rheumy just came up against a brick wall. The link is from Arthritis Care who clearly have been lobbying about exactly this issue, perhaps she could contact them for advice?
Also is NRAS aware of this issue? Observation on here and elsewhere suggests that obstacles can be put in the way of biologic treatment. But usually that's at the level of rheumatology departments down-playing disease .... for a rheumy to recommend biologics and approval to be refused is also appalling. In fact it's worse really since it flies in the face of clinical judgement. DMARDs are only an appropriate form of drug therapy if they work.
Definitely in North East England there is a pathway into Biologics by NICE, my criteria, was failed DMARDS over a period of two years, my consultant has 150 patients on Enbrel or other biological. I asked specifically about funding and he said it was more about patient criteria.
No sorry I dont. Possibly your specialist nurse / Rheumo might. Thanks
Jean
I would recommend your friend contacts NRAS and they can guide her. As has been said already,it may be about satisfying the criteria rather than the funding that is the issue. Hope she gets a satisfactory answer
Sal
Not much to add as all above posts give you great advice but I would after getting more info involve NRAS and your friends MP.
Thanks for that. I will be speaking to the woman hopefully in the next week or so. I'll be passing this information on to her. It is dreadful to think that due to 'austerity' people will be deprived of these wonderful drugs. I myself had to wait 18 months before I was given the go ahead.....thigs don't just work as fast here as elswhere......on the up side, I have, more or less, have had a completly new lease of life due to Abatacept. Thanks for all your reply.
It is a wonderful drug for me. I only see my Consultant every 6/9 months now where as before I was seeing him almost every month. I went through all the bio's I could tolerate, I'm seronegative and can't take Methatraxate. Abatacept is that last one available that I could take so I was very lucky.
what does seronegative mean? I have had severe r.a. for 30 years ,and now wonder if I am also this. I am now on 2 weekly humira, had second injection on Wednesday.
Id definitely challenge this.I'm in Scotland, was taken off anti-tnfs two years ago because they thought I was in remission. Well I wasnt. Put back on Enbrel, that didn't work, am expecting Cimzia later this week. I suspect that some authorities are delaying people getting biologics, rather than denying them, but its not acceptable to be refused a treatment that could really help you. I think we need to publicise this kind of thing especially if its the result of 'austerity' cuts. Good luck
Thanks for your reply. The thing is we are talking about N Ireland here, nothing is ever as it seems. Our 'health ministry' also refuses cancer drugs that are available in Eng, Wales and Scotland. The nature of politics here is very different. Our last 'Health' minister came from a farming background.
The woman I was telling you about is a pensioner and my origional thinking was that due to cut backs maybe funding was withheld purely on age related criteria......which lets face it is against the law.
She is seeing here Consultant in the near future so I will keep up up to date as to what happens next.
I want to say too that the woman I'm talking about may be in the 'Autumn' of her life but, she was told when first diagnosed that exercise would be good for her.....she goes to the gym everyday and swims everyday. She also walks 3 miles every day, either on a tred mill or in the park. Other than her hands you would think she was a woman in her 50's. She has done everything asked of her and now when there was something available to give her the pain relief she deserves it is being withheld due to 'cut backs'.....just doesn't seem right.
I found out through my cancer treatment experiences, that NI does have different guidelines on all treatments. I have two 'chemo' friends who live there and the waiting times for referrals to breast clinics are longer, and all treatments are handled in a different way to the rest of GB. So sorry to hear that your friend has been left 'in the lurch' so to speak, in this way. xx
This is what I've been thinking too. As I said in another post, I had to wait for 18 months after application to get the go ahead for Bio's. I don't know if it is because of devolved government powers, funding, reluctance on behalf of the minister....to be honest over here it could be just about anything.....our 'government' is on the verge of collapse, again, but it is beyond cruel if politics is responsible. Thanks for your reply.
I thought that they might find an excuse not to give me Biologics as I had turned 70, but I was immediately approved on the grounds of a) blood results b) methotrexate not working enough. It had helped a lot, but I was still getting bad flares c) the number of visibly swollen joints EXCLUDING feet being more than 18 . I don't know if they have to show current disease activity, or whether historic damage ( which can't be undone by drugs) counts. Finally d) the patient's subjective assessment of how the disease affects their life is taken into account. Maybe such an impressive exercise regime is working against her, as far as NICE is concerned? Or maybe her consultant didn't make out a good enough case. I wonder what he/she says is the reason for refusal.
I wish her luck, and I am glad Biologics are working for you.
Thanks Jora......I'm just wondering if you may be right about this womans activity! It could very well be working against her. She is a very determined woman and doesn't let things stop her from getting on with life.
From all that I have read on here I'm going to find out more about this. I do know this woman and I know how much she does suffer dispite her determination not to let it stop her from living life to the best she can.
Also, it was mentioned on here about how as we age OA might just take over as a very obvious active cause of joint pain and that just maybe that is what is happening in this womans case.....there are questions that need answers.
I will make a point of finding out more about this case and I will post any new finding on here. It has struck a nerve on the site as I'm sure it may worry some who are awaiting funding......but as I have said, please don't confuse what is going on here in Ireland with the Eng, Wales and Scotland......we are a different breed over here.....for good or ill!
Hello all, due to the interest in my posting about funding for Bio's in the north of Ireland.
I spoke to the woman herself and this is what she told me. Firstly, her Consultant told her she fitted the criteria for him to apply for funding. It had nothing to do with her age, it was solely on the basis of the series of drugs she had been on and that they ceased to work for her for quite some time allowing the disease to spread. The application was made and the Dr was informed that while she did indeed fit the criteria these was no funding available 'at this time' for her to be prescribed Bio drugs.
The two Rheumatiod Consultants at our local hospital are going to government buildings next Tuesday to lobby for funding for this condition but as it stands now and for the foreseeable future there will be no funding available for Bio drugs for the north of Ireland.
So that it.....it is due to money. This woman fits the bill but it seems that thats isn't good enough. My heart goes out to this woman and to other here who find themselves in this intolerable situation.
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