Good news if you like NOACS!!

Thought you might be interested in what the NICE representative said at the Surrey cardiology Conference I attended today ( as patient lead of our Surrey Arrhythmia support group, i e not a doctor!!)

He said patients have a LEGAL right to NOACS if they prefer them to Warfarin ( I like warfarin but that's not the point!)

He was asked about CCGs with holding on cost grounds but said although they might choose particular NOACS that were less expensive, if patients requested particular ones as they had looked into it and felt they were more suited to an alternative, then they should be prescribed!!

For Surrey, it has been calculated that NOACS will cost 88p extra per head of population (not just those using anti-coag) and that means approx £330,000 extra on the CCG budget, but he explained NICE are not allowed to add in costs like social care of strokes and lost work time for those having strokes etc, so really there will be savings rather than extra costs.

We had an excellent presentation about NOACS from a stroke consultant and also another talk from a professor from King College on NOACS,

The slides for all the talks will be on the website of Ashford and St peters Hospital in a few days time - one goes to R and D apparently to access them

We had a talk from Matt Fay and one from Prof. Camm too so lots of interest on the slides.

64 Replies

  • That will be good news for many Rosemary....many thanks for passing it on!


  • This is good news. Not specifically relating to this post, but I have sometimes detected on this forum a kind of view point that if a person is suitable for warfarin, they should only take/be offered that drug and not given a choice.

  • Good point!

  • Hi there Rosy. This is sounding interesting, but I don't follow the maths - I thought that NOACs are about £65 per month against pennies for Warfarin. I'd have trouble justifying that expense to the NHS for myself, just because I find the diet restrictions a bit tedious. I've cost a lot over the years, one way and another.

  • And you are worth it, sorry I think it is absolutely justified if that is a best match for you.

  • I've reservations about the NOACs. I am already frightened of warfarin because I am convinced I'll have some episode that will involve loss of blood. I initially refused to take it for that reason and I'm slightly not unhappy about having a low INR. I already have clipped wings. I don't go walking on my own in remote places as I used to (and by remote I mean footpaths that aren't well used) ever since I had a broken pelvis, and that's partly because of the ease with which it was achieved and the impact it had on my life for some months. It would not be hard to have a nastier injury with significant loss of blood. I had a minor one of those about four years ago. I now have a treadmill. I may end up being scared to set foot outside. But one can always fall down the stairs!

  • I don't think it's pennies for Warfarin Rellim as the test strips alone are just under £3 each and that's without the staff costs/ clinic overheads if patients are not self testing- however you are right that the NOACS are more expensive when first taken but because the other costs disappear I think this partly explains the figures- also the 88p is for all the population and not just those on anti-coagulation,

    Additionally some patients are better suited to NPACS and some do better clinically so I don't think NICE have introduced this just for the convenience aspect

  • I was assuming that the patient was funding 100% of the INR testing, although there's still some expense with dose management.

    Of course when I had 15 consecutive weekly INR tests at the surgery, many of them venous, that would have bumped up the warfarin costs! Couldn't get into range and then when I did, we had to prove an INR over 2.0 for four weeks.

  • Good news. Did they say anything about which NOAC would be better for someone with a sensitive stomach?

  • I think it is dabigatran that can upset stomachs but do check Jean Jennie- the slides will go up soon on the Ashford and St Peters website

  • A number of points here. Firstly NICE had calculated that by now at least 20% of people on anticoagulants would have been on NOACs whilst the real figure is much lower. (I've heard 8%). Second, Mrspat I think the point is why take extra risk of NOAC when Warfarin is not a problem to patients.. So many of us do not have a problem with a drug which has been in use for years so why move? Third , costings. The pence per month does not include the cost of INR testing. I'm not sure how you work that out as the blood clinic is there doing work all the time but like a hospital's hotel costs those have to be apportioned. Fourth, sounds like a great meeting with some real hard hitters Rosy. How did you entice Matt out of Yorkshire? lol

    Good effort!


  • The point is if you are not happy with Warfarin you have the choice and sorry Bob but I think that is exactly the attitude that is being challenged.

  • Agree 100%. Depends on your definition of a problem. Not being given a choice is one for me. So are statements like I objective statements like "extra risk".

  • Above was supposed to be unobective statements. I hate predictive text!!

  • He was very good and suitably forthright about what GPs should be doing Bob!

  • I wonder if this applies in Wales? I kind of doubt it but I will look and see if NICE guidance applies here. We seem to have gone off on our own, not terribly good limb.

  • I was wondering the same thing. I am happy with warfarin but can see a time when I may feel better served by one of the new anticoagulant. X

  • Well that told me didn't it! I'm not anti the NOACs, just don't see the point in changing from something that works fine for me and millions of people throughout the world unless there is a very clear indication that for me there is a benefit. I am all in favour of choice but never quite understand why people , especially many who have never taken warfarin, are so anti it. Of course if you have problems staying in range then the NOACs are the best for you and already available by law as has been mentioned. These choices require balance and agreed cost should not come into it. I was horrified when told that my monthly hormone implants (for cancer prevention) were costing NHS abut £80 a month but no way would have stopped just for that reason. It is important to balance all the risks in all our lives but I will feel happier when the NOACs have antidotes as that rather than cost is what does it for me.


  • Bob _ I am with you on this one ! Warfarin works well for me so why ' risk ' changing.


  • Bob, I hate warfarin because it makes shopping for food, cooking and eating a chore not a pleasure. Looking at a menu is no fun and visiting someone else's house is a real challenge. I have an attitude problem, I know, and should rise above it but that's how it feels. I had a ticking off from my daughter yesterday for eyeing the cranberry topped pork pies which used to be a naughty treat.

  • Do you know I never even think about what I eat other than do I fancy it and my INR is always stable. Just shows how we are all both in body and mind so completely different.


  • I should be more like you, Bob! I am beginning to not care about my INR. As I've said above, although I don't think it is being well managed, I am content enough with being only just in range, though it's peeving that it needs so much warfarin to get it to creep up.

  • Don't worry abut the amount as this is not important . INR is all that counts.

  • I know everyone says it doesn't matter how much you take, Bob, but it doesn't feel too good all the same. It may not actually be poison and may not deserve its reputation but there's stuff in it that makes me depart from the norm to the extent of needing a little yellow card on my person and I'd love not to be taking so much. I feel neither adequately protected from stroke nor safe from the threat of haemorrhage.

    I'm saying no more! I'm on the 8.12 train tomorrow morning.

  • Right on Bob, the only concession I've made to Warfarin is no Cranberry products whatsoever. Other than that my diet now (except for going gluten free and FODMAPS - for my digestive dysfunctions) is exactly the same as before AF - yep, and that includes booze.


  • Surely there should be a policy that everyone who needs anticoagulation should have all the choices, benefits and disadvantages, spelled out to them when they are diagnosed. Why should someone have to wait until they have tried warfarin before being offered an alternative? AFA should be pushing for this to happen. Are those who have accepted warfarin, or have no problem with it, objecting to choice?

  • NO as I thought I made clear. It just suits me and I don't see the point in taking extra risks. There is a PDA available which should help patients make the choice to anti-coagulants which also leans heavily on warnings of HASBLED risks as well. This is supposed to be handed to every newly diagnosed patient for them to absorb and later discuss with their clinician before anti-coagulants are prescribed. Personally I think there is too much emphasis on the bleed risk but that is what NICE and various luminaries have decided upon. MY choice is what it is but yes there is a policy in place as NOACs are approved by NICE. Implementing that policy is the problem as always will be as long as the world is run by accountants. (Sorry Ian).


  • Bob, I need to say this, not intending to cause any offence.

    Like you, I volunteer a lot of time to help a national charity (not medically related). I deal with the public a lot. I wear a badge when I volunteer, a bit like the word "volunteer" appears against your name on this forum.

    When I speak to the public, I am aware that as well as bringing my own experience and knowledge to the role, I am representing the charity. The public, in its wisdom, thinks that what I tell them represents the views of the charity. Mostly there is no conflict between the two, otherwise I wouldn't volunteer.

    My point is, that sometimes we forget whether we are speaking from personal experience or giving the whole picture. I am married to an accountant, so I love 'em.

  • I also have a sense of humour that not everybody understands.


  • I don't like warfarin. I don't like the restrictions of diet and alcohol and I don't like the recommendation to take the same exercise each day. As a runner, training plans aren't built like that. From being very good with my diet pre- ablation I've been less good about it of late. I drink more than I should - and by that I mean sharing a bottle of wine with a friend and not going out and drinking 10 pints, but I still feel really guilty about doing it, as if we're to abide by the guidelines, it should be a small glass, maybe two only. if I have to carry on with anticoagulants, I'd rather take one of the NOAC's, although I envisage a battle with my GP.

  • Are there recommendations about the same amount of exercise? I try to keep to a level amount each day as I think exercise is a big influence in my INR battles. It's the sort of thing I could check on if I was self testing.

  • Hi Rellim. I think that because exercise increases your metabolic rate, the drug is removed for your system quicker. It's just something I've read and I have to confess have chosen to ignore.

  • I was initially prescribed Warfarin, and at the time had no idea that any other anticoagulants were available. OK, keeping INR within range can be a tad tricky, as I have recently discovered, but Warfarin has been tried and tested for many decades so until I learn that other anticoagulants are really so much better for me I will be staying with Warfarin. I do not worry about what I eat and drink. I have a healthy but varied diet, and an alcoholic drink when I fancy one - or may be two! I am not going to wrap myself in cotton wool in order to avoid cuts, scratches and grazes. There is an antidote to Warfarin if needed, other than that applying a bit of extra pressure to a wound has worked for me so far.

    However, if there is a choice for people then they have a right to make whatever choice they want.

  • Right on Langara,

    That describes me and my views exactly. Warfarin - my very, very best friend :-)


  • Thanks for that information rosyG .Of course we are all entitled to them. This talk of extra cost is a misguided and false economy for these reasons

    1. As pointed out in your message the cost of treating strokes is far more expensive, therefore if these new NOACS are more effective at preventing strokes then they should be prescribed, no quibble and will save millions of £'s cost in the long run

    2. They do not have to be monitered as often as warfarin , again big savings on Doctor and nursing appointments. ( I am monitered every 6 months at the moment)

    Another positive point is that there are no diet restrictions on using them so no complications regarding what you eat and drink

    But regardless of cost we are all entitled to them and should have access to them seeing as most of us have all contributed to the NHS all of our working lives.

    People getting cosmetic surgery for vanity reasons do not seem to have a problem or worry about the cost

    So do not let it get on your concience, they are approved by NICE, you are ill and deserve the best treatment, cost should not be an issue

    Every individual should take the advice of their own GP and there might be other reasons not to prescribe them, we are all human with different needs but I wish that the reason for not prescribing them would stop being blamed on cost

    Best of luck everyone

  • I agree Greengo- one little point- did you mean you are tested every 6 months as that seems too long in between checks- I thought the maximum was 12 weeks????

  • If you are on NOACs then you are only monitored for kidney and liver functions so every 6 months is fine. I am (or was) only monitored if I thought I had a problem or then annually.

    Advantages of NOACs. For me:-

    My EP recommended it over and above Wafarin for lower risk of major bleed.

    No monitoring ( I get that for some it reassures)

    No INR to worry about

    No diet worries

    No need to declare on travel insurance

    I can't think of any reason why I would want to be on Wafarin?


    No easily available antidote in case of major accident, but then the half life is 12 hours so much shorter lasting.

    As to cost, sure it needs to be cost effective but I think the fact that NICE are now endorsing NOACs means the costs have been thought through.

    The costs of my AF drugs pale in comparison to the drugs for Mg which are much, much higher. There was a possibility that I might have had to pay for one of them myself because it wasn't licensed for Mg, about £2,500 year, but thankfully my wonderful GP ok'd it. I am very, very thankful for the NHS, but it also needs to catch up with newer and much more effective drugs for many diseases. I have several friends who get prescriptions for drugs that are only available in the US for that reason.

    Medicine is changing through the introduction of technology of many sorts, it's about time that the medical professionals start to catch up. Interesting programme this afternoon on radio 4 on exactly this subject.

  • Hi CDreamer, just want to clear a small point up......"the half life (of NOACs) is 12 hours...." I take one a day (rivaroxiban, 20mg) should I be taking 2 a day? I can't imagine the gp would make a mistake like that, so I need a bit of up dating, please.

    Have just realised that if the half life is 12 hours, then the full life must be......doh!

    I changed from warfarin to riva... a week ago, I just asked and was given it, no argument. I have no side effects, and feel free from diet restrictions, surgery visits and wobbly INR s. Like you, I never cease to be grateful for the NHS.

  • I was informed by EP last week that Rivaroxiban should be taken twice daily.

  • Thanks for replying. It must depend on the dosage then. I'm taking 20mg once a day, and I have checked my info sheet which says that is correct. The lower dosage of 15mg should be taken twice a day for 3 weeks. Thereafter 20mg once a day. JanR

  • RosyG

    See CDreamer's post. I am about the same. My GP actually encouraged me to go on rivaroxiban knowing my lifestyle

  • As most of my work is overseas and travel a lot, I take Pradaxar (I have been on it for 3 years)which gives me the flexibility and in South East Asia I, at times, do not know what I am eating! I have never used the NHS to get the drug, I buy overseas. This will change, I am getting near retirement, travelling less and will be in the UK for longer intervals. In November I will see if my GP will prescribe NOACS. In Mexico I buy a month's supply of Pradaxar for US$95

  • Exactly, agree entirely.

  • Sorry all but I have to comment on this, and yes as a volunteer on this forum.

    There really are some misapprehensions here.

    Firstly please stop amending your diet when on warfarin, unless you binge on dark green vegetables, there simply is no need, avoid cranberry juice, and keep alcohol down, apart from that.

    Adjust warfarin to your diet.

    NOT your diet to warfarin.

    Secondly, when BobD uses the phrase "greater risk", at present I don't think anyone can argue that as a fact, the NOACs do not yet have an approved and licensed reversing agent, warfarin does, of course that will change at some point.

    There is currently NICE figures which state that the cost of the NOACS is currently around twice of that or warfarin, even taking into account blood tests, the drug cost of warfarin is literally pennies a month.

    And you cannot currently argue that the cost of not having a stroke should be taken into account, as there is no scientifically valid evidence yet that they reduce the stroke risk over and above warfarin. This may come, but it's not been long enough yet to formulate that.

    As for greater or lesser chance of bleed on NOACs it would appear that there are several studies and they argue with each other, and of course there are several legal challenges to the NOACs going through US courts for bleeding, although my personal view is that we simply do not know.

    Using your figures of 88p RosyG, and you did not say is this a year? I shall presume so, then the 375,000 people in Surrey Health Trust (and this seems low for the whole of Surrey is that part?, but that is 88p per person) will be £330,000 worse off.

    Now you can argue the politics, and I do not intend to, but factually budgets are fixed, whether they be for the whole country or for a Health District and to find £330k for anti-coagulants then £330k has to come from somewhere else. That might mean an end to cosmetic surgey as someone has said here, but I personally doubt that any purely cosmetic surgery is being done without strong valid reasons. So something has to give, it's not a bottomless pit, and we either move money from another service such as Defence or Education, or we pay more taxes, as Mr Micawber famously points out in David Copperfield.

    By the way if it would cost whole population of GB 88p per person per year, then the NHS has to find £56.4 million pounds and that's 1,911 Band 6 nurses (team leaders, midwifes and specialists)

    (You all know I'm a beancounter so that's what you will get)

    Now my personal opinion.

    I do not think NOACS should be refused for budgetary reasons.

    I am in favour of NOACS

    I think for anyone who has difficulty maintaining their INR on warfarin, or finds it very difficult to maintain testing, then they should very seriously consider the NOACS.

    I have no doubt that in a few years, they will probably become the norm.

    But there does appear to be an increased risk, because we do not yet have reversing agent.

    Sorry off my soapbox now


  • Ian the budget is for Surrey Downs CCG which is, as you guessed, only part of Surrey- I think the NICE representative was referring to the results of studies we were shown yesterday where the NOACS were , in some cases, better at preventing stroke and ICH, and these were the costs he said would be saved even though they can't be factored in.

    I raised the question of the proportion of time the warfarin patients being compared in the studies had been in correct INR range and it was 55-64 per cent-( different studies) so of course if one is in range for a higher percentage of the time warfarin might well then appear to be safer- i think this is why NICE are looking at self-testing and why we are arguing for weekly self testing locally as studies have shown this gives more time in correct INR range

    You are right it is not a straight forward picture but it is interesting to hear from some clinicians involved in this area who say they would take NOACS if they had AF!!!! I asked for answers based on safety not convenience!

    lastly, if one's INR suddenly goes haywire, as mine did last weekend, there is a very good argument for adjusting one's food- which I did with spinach, to bring my INR back down- it's not an exact science but needs must at times!!

  • And I know that beancounters like the bottom line.....

    ..... This seems to be that if you can tolerate warfarin medically, accept the hassles (which don't really matter or maybe don't even exist) and don't be so selfish as to choose a more expensive medication just because you can. It isn't only the doctors who are hiding their cost-saving views behind the risk bogeyman. If people can accept that NICE were right to change the guidelines about aspirin, why can't they accept the guidelines about NOACs?

  • Good point.

  • I have just come back from the USA whilst on Warfarin but have recently been considering asking my GP about changing to an alternative because my INR has been fairly unstable. It is now almost 5 months and at my last visit my nurse said I was sitting at 52 per cent which according to her was not great. However, whilst in the States every two minutes I heard adverts on TV from lawyers enquiring about people taking would scare the living daylights out of you.....not once did I hear anything about warfarin - really makes me a bit scared! I wish I could get on better with Warfarin....Oh and can I say...I do not know what I would do if I didn't have this forum to lean on....thank you for listening. Patricia.

  • Patricia do you think self testing might help- it's useful if you travel and you can test and get advice on adjusting dose more frequently - by e mail- so you stay in range more

    Several studies show more bleeding with warfarin so it's odd that the ads are just about NOACs.

    I like warfarin as we can test to see if we are in range but if the manufacturers come up with both antidotes and tests to show how well anti coagulated we are it may be another matter

  • Patricia I know it is scary watching those ads, I certainly was as we travelled a lot in US as my husband works thee. Before I started taking NOAC I looked up a lot of the class actions against the companies and what emerged was that in the early days too high a dose was prescribed which did result in some older people (75+) being inappropriately prescribed NOACs and having bleeds, more brain than stomach if I remember correctly.

    It was also recognized that not enough attention was given to warning people on the packaging about the risks. Hence the class actions, and don't forget that is how US lawyers make their big bucks!

    I came to the conclusion that if you were sensible, under 75, fully informed and read the risks and how to take the drug safely, the rate of major (not minor) bleeds was less than for Warfarin. Hence my anticoagulant of choice.

    I discussed this with my GP who agreed that the class actions were in the most part not significant enough to influence my choice.

    And that is the point, it's a choice, or should be!

  • Hi

    Who did your travel insurance for USA

  • My husbands bank account has insurance attached to it. We only had to pay £150 extra for the year. We declared everything so was well worth it. Hope you get sorted. Patricia.

  • Some people might find the following links interesting regarding the most affective prevention of strokes

    I hope that the links work

    There is a lot to read but I found that the paragraphs under "Getting to know NOACS" interesting

    Here is the conclusion of their finds

    "Take-home messages on the NOACs are that more patients should be adequately risk stratified and treated appropriately with oral anticoagulation. Further education of primary care and patient information will be crucial in decision making and adherence. Used according to their licence, NOACs seem to have good tolerability and safety profiles when compared to warfarin. It is important that stroke physicians and cardiologists take a lead in this area, particularly with newly published NICE guidance on atrial fibrillation.4

    New NICE atrial fibrillation guidelines encourage best practice

    Since 2012 three NOACs have been approved by NICE. However, there is evidence that these drugs are not being as widely prescribed as they could. The new generation of oral anticoagulants are potential lifesavers for some people with atrial fibrillation – particularly those who find it difficult to achieve optimal anticoagulation on warfarin or those who are intolerant to warfarin. They are also an option for people newly diagnosed with atrial fibrillation who have a higher risk of stroke and for those currently taking aspirin for stroke prevention."

    I would like to see figures for the costs of weekly monitoring for thousands of patients and stroke treatment opposed to the cost for NOACs

  • Hi Gringo

    Those figures are available, the costs of warfarin including monitoring, which of course is not weekly except for the first few weeks, is roughly half that of a NOAC. A Noac is roughly £80 - £85 a month and warfarin including testing around £37.50

    Completely agree about the savings to be made from 7000 unecessary strokes a year, but to measure you would have to know how many more would be saved on a NOAC rather than warfarin, and that's where the figures are muddier, the studies are either very small or not exactly unbiased (ie from the drug companies who make them) Those studies will come I am sure along with a reversal agent for the NOACs.

    But I 100% support the NICE guidelines, that any person has the choice of anti-coagulant, be that warfarin or a NOAC.

  • Beancounter thank you for information and I get your point about drug companies.

    But I do not like the implication (not yours) that people on NOACs are selfish and should feel guilty because of the cost.

    It is their own life that they are trying to preserve and as I have already said they have most certainly paid into the NHS all of their working lives so that they are entitled to the best treatment and advice available enabling them to live a normal life as NICE states

    NI does mean National INSURANCE .

    Maybe people should not have heart transplants, cancer treatment or any other life saving procedures on the grounds that they feel guilty about the cost and are being selfish?

    As for "muddier" do we trust NICE's and the 23rd European Stroke Conference "small" findings or not?

    It is there to read .

    Are these experts findings that NOACs are more affective in preventing strokes opposed to warfarin not based on facts or are they are all in the hands of the drug companys and their beancounters ?

    Oh. another figure which I think is also available is that it costs £50,000 per year to treat each stroke victim for care and medication

    That is £50,000 X 7,000 which could have been prevented and going up every year

    Does that offset the extra costs for NOACs?

    It is all very interesting, the more patients know and are properly advised the better

  • Greengo, I was being ironic. The message that I was getting from some people here, perhaps wrongly, was that I should take warfarin and not an NOAC unless there were compelling medical reasons against me taking warfarin. My argument is that I don't need to justify my choice on cost grounds or anything else. I certainly don't feel selfish nor guilty.

  • Mrspat, I do feel a bit guilty, I actually said so to my gp. I wasn't doing too bad on warfarin, felt comfortable and safe. But my hair began to fall out, and it upset me considerably. I was convinced it was the warfarin, and really wanted to change to an NOAC. As I said earlier, my gp did not quibble, which made me feel better. But part of me cringes to think that my reason for change was simply cosmetic, self esteem if you like. I had other reasons, which we have all mentioned, but really, I could have stayed with warfarin. I feel a bit self indulgent and precious. :(


  • Yes, I had the falling out hair too. Many would consider that to be a cosmetic issue only. Apart from all the "usual" issues with warfarin, the straw that broke the camel's back for me was being on antibiotics for a couple of months plus changes to other medications that I take. All affected my INR and I explained to the cardiologist that I could not face taking a drug that has so many interactions, probably for the rest of my life.

    However, even without the medication interaction issue, I would have pushed for a NOAC.

  • Thanks, I'm glad not to be alone on the thinning hair issue. I do feel a bit better, as what you said about some meds interacting, especially antibiotics, does resonate with me.


  • Hi Greengo, can you point me to the research on stroke prevention you are referring to, only all I can find is research presented by Watford and Southend in secondary stroke prevention, which of course is a much different scenario to the primary prevention for which we take anti-coagulants. I very much hope that very few of us ever need secondary prevention.



  • I agree with you there Ian

    This link might be helpful and is worth reading right through

    As you can see this comes from some very important people in the NHS, so if we do not trust their opinion based on the research that they have done who do we trust in the end ?

    Their findings seem to show clearly that millions of £s and thousands of lives can be saved by better treatment (In their view NOACs being prescribed more freely).

    If individuals are happy to stay on warfarin then let them and I wish them all well, but some people would like the choice after detailed consulation with their GP

    Keep well and keep your good work up

  • Sorry to hog the forum but I forgot to post the other link

    7,000 less strokes to treat would be an heck of a lot of saving in money. That should make the bean counters happy, ease people's conciences and hopefully uplift a lot of people which I think was the purpose of your original post rosyG

  • Thank you Greengo- that was the intention !!

  • Thanks greengo, useful information.

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