58. Translarna drug Policy for use. The Hon. Member for Douglas South (Mrs Beecroft) to ask the Minister for Health and Social Care:

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1 58. Translarna drug Policy for use The Hon. Member for Douglas South (Mrs Beecroft) to ask the Minister for Health and Social Care: What his policy is regarding the use of the drug Translarna? The President: I move to the next Question, but, Hon. Members, exceptionally, I would wish to bring forward Question 58 to be tabled now. This is with the agreement of the questioner and the Member concerned and the Member answering the Question. Question 58, Hon. Member for Douglas South, Mrs Beecroft. Mrs Beecroft: Yes, thank you. I thank you, Mr President, and I thank the Minister for agreeing to bring this forward. May I ask the Minister for Health and Social Care what his policy is regarding the drug Translarna? The President: I call on the Minister to reply, Mr Quayle. The Minister for Health and Social Care (Mr Quayle): Mr President, just for a point of clarification, I thought I had it down here as Oral Answer 59 not 58. Have I got it wrong? Mrs Beecroft: It is 58 on mine. Mr Quirk: The agenda was changed. The Minister: Oh, the agenda was changed. Sorry, I am on an older date then. The President: It is the Question regarding the drug Translarna. Based on advice from the Clinical Recommendations Committee, the Department of Health and Social Care has agreed a policy not to fund Translarna for patients with nonsense mutation Duchenne Muscular Dystrophy in the Isle of Man. The Department has a limited budget with which to fund all health and social care for our population. It is not possible to fund everything that may be requested and therefore hard decisions have to be made on occasion. The Department of Health and Social Care set up the Clinical Recommendations Committee to draft policy regarding new drugs and other medical treatments which would require additional funding if they were to be included within NHS provision on the Island. The Clinical Recommendations Committee follows a clear process and makes recommendations against an ethical framework. The final decision on funding sits with the Department of Health and Social Care Chief Executive. Policy statements, which include the reasons for the decision, are publicly available on the Government website. Ataluren Translarna is a new drug for a particular type of Duchenne Muscular Dystrophy. This condition is very rare. The drug has a limited licence from the UK Medicines and Health Care Regulatory Authority and the continuance of the licence is dependent on the manufacturer submitting further evidence to show that the drug is effective in slowing down the loss of walking ability which is part of the condition. This limited licence reflects the fact that the current evidence of effectiveness, from clinical trials, is inadequate to show whether or not the drug is beneficial in slowing decline in walking.

2 The National Institute of Health and Clinical Effectiveness (NICE) publishes guidance for the NHS in England and Wales. NICE has issued a draft recommendation that Translarna should be available on the NHS for patients with nonsense mutation Duchenne as part of what is, in effect, an extended study designed to provide data on clinical outcomes. NICE is proposing that the NHS-funded study, which they call a managed access scheme, should run for five years, after which the outcomes and funding will be reviewed. The Clinical Recommendations Committee considered all the evidence reviewed by NICE and the arguments that led to NICE recommending the managed access scheme. However, the Committee concluded that the evidence for clinical effectiveness was currently inadequate to justify the very high cost a sum of around 200,000 to 250,000 per individual per year. The Committee also concluded that funding for what is in effect a clinical study should not be a priority, given all other calls upon resources. The President: Supplementary question, Mrs Beecroft. Could the Health Minister confirm when we do not comply with NICE, because when a new drug comes out we are told it is not available because it is not complying with NICE guidelines, yet in April NICE recommended the use, as he said, provided it was under a managed access programme and provided that you could get it at the right price? It is under a managed access programme, it is obtainable at the right price. The Isle of Man can share in the deal that the NHS have with the manufacturer. So why aren t we going by NICE guidelines in this particular instance? I do believe I did answer that in the original Answer to the Hon. Member. This is effectively a trial. If this drug worked beyond doubt we would not be having this five-year trial that they are having in England. It is also worth pointing out, Mr President, that Scotland and Northern Ireland have also decided not to fund the Translarna trials and they feel that the treatment of the Duchenne muscular dystrophy resulting from a nonsense mutation that the evidence does not support using it at the moment. So it is not just the Isle of Man who has made this decision; it is Scotland and Northern Ireland too. I am sure the clinical review Committee will review the decision once they see the data from the trial; and if it is proven to be a success then I would be very disappointed if we did not then allow the drug. The President: Mrs Beecroft. Is the Minister aware that this is not actually an extended clinical trial? There is a big difference between an extended clinical trial and the managed access programme which has been agreed with NICE. Could he further clarify why children in England have access to this and we are supposed to have the same access as our counterparts and yet we would not have it here? There seems to be a real void, a big discrepancy, between what is available in England and what is available here; and the NICE guidelines seem to be used almost at whim when we feel we want to use them, rather than being used in a consistent format? If we are following NICE guidelines, we are following NICE guidelines; if we are not then we are not.

3 It is disappointing that the Hon. Member has had the opportunity to ask these questions of the panel themselves. In fact, our Department publishes all these answers on our website, which are available at and that sets out the full background. It is a highly complex case. The Hon. Member, to the best of my knowledge, has not approached, for example, Mr Peake, who is the Chairman of the clinical review Committee, the Hon. Member for Douglas North; she has not approached any member of the Department to have an in-depth discussion to raise these points. I have given the answer based on the expert advice from our clinicians, clearly stating why at this moment in time they do not feel it is beneficial and that the Isle of Man should do it. I hope no Hon. Member of this Court will feel that any of the political Members of the Department take this decision lightly. It is a horrible position to be in, (A Member: Hear, hear.) but we have a duty of care to the people of the Isle of Man to take advice from our clinicians on what is the best way forward, and they have not supported this, as is the case in Scotland and Northern Ireland too. The President: Hon. Member for Douglas West, Mr Thomas. Mr Thomas: Thank you very much, Mr President. Can the Minister confirm my understanding that there are two decisions of the Clinical Recommendations Committee: the first one is about the policy, which has clearly been explained today; and the second one, as I understand, there is a chance for an individual to make an exceptional application through the consultant? Has the Minister said today that any exceptional application is already automatically turned down, or is there a chance for an exceptional application to be made in this case? The Hon. Member for Douglas West raises a good point. Yes, the Committee is there for the consultant who represents a patient because I do not want to get into an individual case on this, Mr President; an individual patient cannot refer themselves, but their consultant can apply to the clinical review Committee to put forward the case and the Committee review the decision. The President: Hon. Member for Ramsey, Mr Singer, Deputy Speaker. The Deputy Speaker: Thank you. I wonder if the Hon. Minister could just clarify something that I do not quite understand, in that we are told NICE has approved this drug, (Mrs Beecroft: Five years.) but is it not a fact that it is only for the trial of 50 children over a five-year period that it is not available to all children that suffer from this particular ailment? Is that true? The Minister: Thank you, Mr President, and I thank the Hon. Member, the Deputy Speaker, for his question. The evidence I have got before me, Mr President, is that it is a five-year trial and they are looking to limit it to 50 people to have the trial. This is an incredibly rare disease; the prevalence is 1 in 9 per

4 hundred thousand people who have the disease and therefore it may well be that there may only be 50 in the UK, but based on that percentage there will be more, I would have thought, than 50 people in England, sorry but I cannot give any more information on that. The President: Hon. Member, Mrs Beecroft. Going back to the NICE guidelines, I still would like some clarification on the policy do we stick to them or not? Because my understanding is that this is not now classed as a clinical trial, it is classed as a managed access programme, because of the rarity of this condition. My understanding again is that the manufacturer is funding for 50 children at a very reduced rate, on the basis that they have access to the data that flows from that so that further proof can be shown. You cannot have a clinical trial extending for years and years on end. It is just not moral and nobody could justify it, which is why the clinical trial has stopped, NICE have recommended that it is available for children with this condition for the next five years, provided it is under a managed access programme, which we do have here. So I do not know why it is going to a Clinical Recommendation Committee The President: Where is the question please? Mrs Beecroft: which is what I would like the Minister to answer. If we are applying NICE guidelines, why is it being sent to a Clinical Recommendation Committee in the first place? Why are we just not applying NICE guidelines? The facts, as presented to me, are that the reports already into this drug are not conclusive. There are various tests: it has failed to show any signs of reducing the length of mobility in young people in one of the tests; in the other, I believe, in the six-minute walking test, it was 37 or 38 extra metres that someone who had been on the drug was able to walk. Sadly, the drug cannot save a life; it can purely reduce the loss of mobility, at best, over a certain period of time. Therefore, because the clinical trials that have taken place so far are inadequate to show whether or not the drug is beneficial in slowing the decline in walking, it has been agreed that NICE are going to do an extended study designed to provide data on the clinical outcomes. That is where maybe the Hon. Member for Douglas South and myself are having a different interpretation. I can only go on, obviously, the evidence provided to me. It is highly complicated and it is incredibly emotive too, but it is disappointing that we have not been approached to have a full discussion on this. I could have even brought in some of the medical clinicians who made the decision, to answer any technical questions that the Hon. Member had but it did not happen. The President: Supplementary question, Mr Karran. Mr Karran: Vainstyr Loayreyder, would the Shirveishagh clarify I do not understand his statistics: 1 in 9 in 50,000? But could the Shirveishagh not agree that the point is it is not the individual case, it is actually the policy change that has been allowed to happen with this case, and that is that we agreed, as one of the people who supported the previous Minister when Mr Anderson had a situation and, fortunately, he did that and it did work for his constituent that the situation is that you are breaking your own policy? You agreed, we agreed in this House, that we would support any NICE recommendations for our citizens on the same basis as what we would have in England and Wales.

5 Are you now absconding from that policy decision that was made in the past? That is the issue that we need to know here, outside the individual case. That is the issue that we need to know and I hope that the Hon. Member will reaffirm that our policy is, in Tynwald, that we follow NICE guidelines; and if a citizen of the UK can get it, then it should be the same in the Isle of Man. Is that not the case? In answer to the Hon. Member s questions, the evidence given to me is that the trials are not conclusive. NICE has not given total 100% support to this. If it did it would not be having a five-year trial with 50 people taking part. If it was straightforward, NICE approves this, everyone in England would be getting this and there would not be any further trials. This is a trial because there are doubts, I am led to believe by my medical professionals, into the benefits and efficiencies of this drug. An awful lot of drugs, sadly, the manufacturers make all sorts of claims to have certain benefits and, sadly, it has been our experience and that of the UK in general, that an awful lot of these drugs, whilst costing us a lot of money, do not deliver what they say on the tin, effectively. The President: Supplementary, Mrs Beecroft. Would the Minister confirm that I have actually contacted him twice about this? The second time was after the news release by NHS England on 7th July, saying that they had successfully negotiated access to the new drug treatment for children with Duchenne muscular dystrophy on this particular gene. I asked him, Would his committee have another look at it? and he said, No, so I really saw little point in making appointments to go and see them or to carry it any further. I would also ask the Minister: has he had the information correctly given to him about the trials? Because he said it was too short to demonstrate the impact. The information I have is that in both studies subset analysis was analysed in those boys who were starting to decline; and this is over the period of the six-minute walk that he referred to. Zero of the 69 boys treated with Ataluren lost the ability to walk, while six of the 74 boys on placebo lost the ability to walk during the 48-week period. A trial with the duration of 48 weeks is standard in rare diseases, where no current treatment exists. Is the Minister aware of those figures? The Minister: Yes, Mr Speaker sorry Mr President. My apologies. I will get used to it. At least I did not call you Madam President! Yes, I am aware of these figures, but equally there are other figures where tests have been inconclusive and the manufacturers of the drug have withheld giving NICE evidence when they have asked for some of the tests. So there are always two sides of the coin. One of the tests has been supportive to the outcome; one of them not so, but there are areas of evidence that the manufacturers have not provided to NICE when asked. So it is not a good place to be, Mr President, but I am not a qualified clinician. None of us here are qualified clinicians maybe with the exception of the Hon. Member for Ramsey, Mr Deputy Speaker, who is a qualified pharmacist but we have to go on the advice given by our experts, and that is what we have gone with. The President: I am taking two more supplementaries. Mr Hall.

6 Mr Hall: Thank you, Mr President. Does the Minister not agree and feel that on this particular sensitive issue there needs to be perhaps some more clarity surrounding this particular drug and [Inaudible] it is for? One thing I would like to highlight, if he could perhaps go away and have a look at the I have actually looked at the research that the figure that there have been 2,500 boys that have this condition and the 50 that have been selected I have not heard the word trial or read that word in that context, but the 50 that have been selected are because they are most eligible because the drug is most effective for those who have not yet become wheelchair bound and so can he, please, go away and perhaps come back with some more information and clarity on it, because there is a bit of a zone of confusion, I think, around? Yes, I am more than happy to write to the Hon. Member for Onchan, giving him an update on his concerns. He is right: this drug is more beneficial to people when they are able to walk still without any signs or loss of mobility. When they are in a wheelchair it is probably too late to use for it to be effective. So, yes, I will have that clarified that point. It is a highly complex decision. It has not been made lightly. It is most regrettable, No one would want to be in this position, but based on the advice given to us by our Clinical Recommendations Committee, we have declined the use of it. The President: Final supplementary, Mrs Beecroft. Could I ask the Minister if what he is saying is true, that NICE did not get some of the evidence that they requested, why are they comfortable saying that it should be used for the next five years? Why are they recommending it for use? And further, does he believe that his Clinical Recommendations Committee are actually better qualified than NICE? I think one of the complaints about the trials before was that they were only for two years and therefore they were not conclusive enough. Therefore it has been felt that there will need to be a five-year trial for it to be conclusive. I appreciate there will be various medical arguments, but it is not just the Isle of Man; Scotland have come to exactly the same conclusion too, and have Northern Ireland. Their medical experts say that at this moment in time the evidence presented for the use of this drug on people is not good enough for them to warrant using it. So that is a clear comment.

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