Extremely worried

Just got the NRAS newsletter email and read about biologicals only being funded for people with severe RA. Does this mean they will take my humira away? Before the biologicals came along I was in a right state. Unbelievable pain and could hardly walk at one point. They came to late to save my hands but at least now I'm more mobile, in less pain and able to work. I despair at the decisions of N.I.C.E. these days.

21 Replies

  • No, I think if you have been given Humira then it would be considered unethical to take it away. Anyway it sounds as if you needed it, so in my mind you qualify as having severe RA. I really wouldn't worry!

  • Thank you for the reassurance. It's a shame some people are going to miss out on these drugs now.

  • Hi Shelley of you look at Nras.org.uk at news the full document is there .

    It's discussing extending the use of biologics not people already using them .

    So I think it means that the protocol of getting biologics for severe RA is the same but they won't extend it to those with moderate (lol) RA they won't qualify.

    So you have to wait till it gets severe before biologics ?! Very short sighted of nice .

    I doesn't say they will withdraw drugs tho , that's against ethics I think .

    Maybe NRAS will clear up our questions on Monday ?

  • Makes you wonder what they will term as severe. My mom is really suffering and she can't get them. Maybe because she's 65. Her consultant said its because she's too far gone.

  • If your mum is suffering because of joints that are already damaged then different drugs won't help with that. Generally age isn't a problem unless you are in bad health from other things.

  • You're probably right. She had a double hip replacement in 1985 and both her knees 2 years later but lately her feet have started playing up. Think that maybe the fact that a wire in the hip is broken but they won't operate to fix it.

  • That's why the charities are upset as if you can get treated at moderate or early stage it could help suffering and joint problems in the future st a lower cost to the nhs overall. Bad decision .

  • Hi Shelley

    I'm also on Humira and panicked at the news in case I am not deemed severe. I'm certainly not anymore...but that's because I'm on Humira!

    What happens if, for example, I get side effects and need to change; will I only be allowed if my RA is 'severe'? It won't be severe because I'm quiet on my current biologic.

    I have questions!

  • Hi crash , I feel that if u had to change your drugs your RA would stil be covered as your underlying disease is severe but controlled?

  • That's a good point but what about people with so-called moderate RA who've benefited from biologics but need a change?

  • To be fair, that document did say it would take some cases on their merits but if you're seronegative and anti CCP negative, you're up the creek without a paddle.

    Hopefully, you're not like me, on paper should be mild but sadly, RA doesn't follow the textbook and my RF and anti CCP negative disease has caused joint damage. Blimmin' ridiculous!

  • You might wish to keep an eye on this. I am aware that Humira use on paediatric retinal disease has been stopped recently, completely. They want to cut the cost because they haven't got enough cash to pay. In my impression, as much as I hope it isn't the case, Humira is seen as an expensive drug on NHS and they want to stop this drug.

  • Interesting though that there has recently been a biosimilar (cheaper) biologic just approved for ankylosing spondylitis - seems the NHS is managing to get some of these meds a bit cheaper, which hopefully means they will make them more available in the future as the patents come off and generics and biosimilars start to appear.

  • NHS ought to source Brand Humira or generic version from China or Eastern Europe. If they are made in developed countries, they are bound to stay expensive and NHS would not be able to afford.

  • THe way i read it is that they are not extending the protocol that is in existence , so new people would get biologics if severe and three failed dmards. So the same as before but the poor people who are not high numbers of inflammation will get dmards, still good , but not as in other countries biologics.

    I hope Nras will put a further info on Monday X

    Off to sleep after hand op X try not to worry xx

  • Hoping I'm right with how I read it ! Xx

  • I agree with you - that's how I read it too. Let's hope biosimilars help ease the pressure.

  • I read the same as you. I still wonder about what will happen with those who need to change drugs and how it will be assessed.

    In my health trust, it's not as challenging to get Humira for Inflammatory Bowel Disease as it is for RA and other types of inflammatory arthritis.

  • I suspect the protocol will stay the same, as now when h change drugs I believe they apply for funding again gir the new drug. I've changed drugs maybe 5 times and never been refused. Ok defo off to sleep now, thinking of you X

  • Try not to worry. I don't know if different areas have a different protocol but here in the north of Ireland the procedure is that once you have been given approval for Bio's you will always have access to them. I am at present not on Bio's as there are none available to me at that I can tolerate but I have been told that as soon as one becomes on line I will be getting it. I'd say that that is NHS policy. Jean

  • Hi Shelly

    Don't worry, if you are already on biologics this NICE decision will not take them away. What we and the BSR were trying to achieve by appealing the final decision on the Multiple Technology Appraisal biologics review, was to try and get NICE to widen the criteria so that more people, particularly those with moderate to severe disease which is defined, in clinical terms, as those with a DAS score of between 3.2 and 5.1. could access a biologic. Currently you have to have a DAS of over 5.1 to be eligible to get onto biologics. We were not asking them to open the floodgates for everyone with moderate disease because we knew they would never buy that, but only those with a poorer prognosis and we defined 3 specific criteria for that which are detailed in our press release on the website. We all worked so hard to try and get this so it was really disappointing that they turned down the appeal. However, at least now you only have to achieve a DAS score of over 5.1 once, not as it was before, two times one month apart, so a bit of progress in the right direction!

    Best wishes


You may also like...