Science and Technology Committee
Wednesday 24th June 2026
Skip to latest contribution
This debate has concluded
(began 3 months ago)
Watch LiveSkip to latest contribution
This debate has concluded
10:16
Speaker 1
-
Speaker 1
Good morning. The Select Committee on Science and Technology. We are continuing our inquiry on innovation in the NHS, personalised medicines and AI. We're very pleased this morning to have as our first witness, Professor Jonathan Benger, who's chief executive of the National Institute for Health and Care Excellence. Nice. So, Professor Benger, thank you for coming. Um, by way of. Introduction, could you explain Nice's core responsibilities as well as its role in supporting the NHS to adopt innovative technologies and medicines, particularly in the areas of personalised medicines and AI that.
As you know, our inquiry is focusing on. Would you like to start?Of course. Thank you, Lord mayor, and thank you to the committee for giving me the opportunity to give evidence. I'm delighted to do so. Was founded in 1999 and our core purpose hasn't changed since then, which is to ensure that we get the best care to people fast and ensure value for the taxpayer. Terms of the areas that you describe in this committee is, is looking at our purpose is exactly the same.
So it's to determine what works clinically, um, in the NHS. Um, what is cost effective in terms of use of NHS resources and to produce guidance as to how those technologies should be implemented into clinical practice.
As you know, our inquiry is focusing on. Would you like to start?Of course. Thank you, Lord mayor, and thank you to the committee for giving me the opportunity to give evidence. I'm delighted to do so. Was founded in 1999 and our core purpose hasn't changed since then, which is to ensure that we get the best care to people fast and ensure value for the taxpayer. Terms of the areas that you describe in this committee is, is looking at our purpose is exactly the same.
So it's to determine what works clinically, um, in the NHS. Um, what is cost effective in terms of use of NHS resources and to produce guidance as to how those technologies should be implemented into clinical practice.
10:18
Speaker 2
-
Speaker 2
Okay. Thank you very much. We have a lot of questions for you, as I'm sure you know. Um, before we go on to questions from other members, I would like to ask you about the recent arrangement between the USA and the UK on the pharmaceutical pricing. Included a provision for Nice to raise its threshold for affordability to between 25,030 £5,000 per quality adjusted life year. In other words, per quality. Yes. Could you give us some insight into the impact of this particular move?Uh, can you give examples of treatments that will now be available that were not before?
10:19
Speaker 1
-
Speaker 1
So I just think I should begin by making it clear that the position of Nice and my position as the chief executive is that it's for the government of the day to determine how much money should be spent on the NHS and on medicines within the NHS. And obviously it's our job to do our role in the system of to determine clinical and cost effectiveness. According to the threshold that's been set by government um in. Increasing the the threshold has the effect of increasing access to important medicines for individuals who might otherwise not have been able to access those medicines.
Um, under the previous threshold. Also increases the total amount of money that the NHS will spend on medicines. That is an intended effect as part of the UK US trade deal, as I understand it. So it's difficult to give examples because what we don't know is what would have happened if we hadn't have increased the threshold. There is an element of commercial negotiation that goes on outside Nice's processes. Um which often achieves a cost effective price for the NHS.
Um and so the, the counterfactual as it were, is, is difficult to determine. But our estimates suggest that an additional 3 to 5 medicines will be approved by nice every year that wouldn't otherwise have been approved. That will give access to patients who would otherwise have missed out on life saving or life changing medicines. Um, one example that I would point to would be given that for muscular dystrophy, um, which we approved shortly after the threshold change towards the top end of that threshold range that you've described.
I can't guarantee, but I think it's very likely that we would have not been able to make a positive recommendation for that medicine under the previous threshold. Um, and as a result of that, boys with Duchenne muscular dystrophy are able to access a genuinely life changing treatment.
Um, under the previous threshold. Also increases the total amount of money that the NHS will spend on medicines. That is an intended effect as part of the UK US trade deal, as I understand it. So it's difficult to give examples because what we don't know is what would have happened if we hadn't have increased the threshold. There is an element of commercial negotiation that goes on outside Nice's processes. Um which often achieves a cost effective price for the NHS.
Um and so the, the counterfactual as it were, is, is difficult to determine. But our estimates suggest that an additional 3 to 5 medicines will be approved by nice every year that wouldn't otherwise have been approved. That will give access to patients who would otherwise have missed out on life saving or life changing medicines. Um, one example that I would point to would be given that for muscular dystrophy, um, which we approved shortly after the threshold change towards the top end of that threshold range that you've described.
I can't guarantee, but I think it's very likely that we would have not been able to make a positive recommendation for that medicine under the previous threshold. Um, and as a result of that, boys with Duchenne muscular dystrophy are able to access a genuinely life changing treatment.
10:21
10:21
Speaker 1
-
Speaker 1
Not really. No. I think it's it's very difficult to as I say, one is trying to predict what would have happened without a threshold change and then trying to predict what. And then observe what happens with a threshold change. Um, I think it's absolutely clear that we will spend more money on medicines. Um, but the actual kind of quantity is difficult to, to be clear about. Um there is a, a general increase potentially in the price that we pay for medicines that is associated with an increase in the threshold.
But, but it's very difficult to quantify and it's likely that to start with the financial impact would be very small because we're talking about a small number of medicines, but obviously over time, the cumulative impact over over years would be greater.
But, but it's very difficult to quantify and it's likely that to start with the financial impact would be very small because we're talking about a small number of medicines, but obviously over time, the cumulative impact over over years would be greater.
10:22
10:22
10:27
10:27
10:27
Speaker 4
-
Speaker 4
But it's not possible to measure the impact if you're not able to measure the impact. How on earth do you negotiate such a very strange that a negotiation has taken place on pharmaceutical pricing, which has led to a if you're not able to measure the impact, how on earth do you negotiate such a thing?
10:27
10:27
10:28
Speaker 1
-
Speaker 1
So obviously, the trade negotiations are outside my remit as the CEO of nice. As I understand it, the government have completed an impact assessment of the changes in the threshold and the UK US agreement. We at Nice have provided some information that feeds into that. Um but I don't believe that that I've not seen that particular impact assessment. And I don't know whether it's available, uh, in, in the public domain or I certainly haven't seen it. I think it's also important, as I said before, is that the challenge is that we're trying to predict what would have happened if we hadn't increased the threshold.
And that is to some extent, obviously unclear. So had we changed, had we stuck with the previous threshold, we would have continued to approve drugs. Um, but what is certain is whether a particular drug that we approve now under, say, for example, if, if we approved a drug at just above 25 or 20 or say 29 or 30 000, whether that would have been the case had the threshold not changed. So we are, to some extent, speculating on events that that we cannot predict because they haven't happened.
But. Sorry.
And that is to some extent, obviously unclear. So had we changed, had we stuck with the previous threshold, we would have continued to approve drugs. Um, but what is certain is whether a particular drug that we approve now under, say, for example, if, if we approved a drug at just above 25 or 20 or say 29 or 30 000, whether that would have been the case had the threshold not changed. So we are, to some extent, speculating on events that that we cannot predict because they haven't happened.
But. Sorry.
10:29
Speaker 4
-
Speaker 4
Professor. Surely that's always the case. One is faced with making a judgement based upon estimates and assumptions of the future. But these estimates and assumptions are helpful guides when trying to make good decisions. So, um. So would it be helpful?Do you believe if that impact assessment, assuming you're right, that it has been done and was done as part of the preparation for that negotiation, would it be helpful, do you think, for it to be made public, to sort of improve the quality of understanding of the the process that nice is going through for the general public patients?
10:30
Speaker 1
-
Speaker 1
As I said, Lord, the this is a decision that has been made by government in relation to their negotiations with the US. There was a consultation that the government ran on the change to the threshold. Uh, and I believe the impact assessment was part of that. I don't believe the impact assessment has been published. I really can't comment further than that.
10:30
10:30
Speaker 5
-
Speaker 5
See can I just come back briefly to your your sort of semi answer. To um Lord Patel, is the issue of rationing. Shouldn't we recognise that this may be a difficult word politically, but actually, don't we ration through the internal market?Aren't we rationing, for example, with some treatments for dementias and for mental ill health?Increasingly. And isn't that inevitable if we're going to run the health service?
10:31
10:31
Speaker 1
-
Speaker 1
Think it's a choice of words. Uh, Winston, in terms of I would see it as, as being our job at nice is to ensure that we get best value for a limited health budget. That means that we recommend treatments that are cost effective and don't recommend treatments that are not cost effective. You could say, well, that's rationing, but I would also say that that's good health economics and that's good kind of stewardship of a limited budget to ensure that the most people get the most benefit.
As I say, inevitably the budget is fixed. There are more there's more requirements on the health service than we can meet. Um, the example that you, that you cited, for example, about some medicines for dementia recently that we've looked at that we haven't approved because we don't believe on the basis of the evidence that's been presented to us to date, that they achieve sufficient benefit for the cost. And if we were to invest in those medicines, we'd have to disinvest in services that we know are better value for money for the whole population.
It's obviously disappointing for those individuals with dementia, but Nice's job is to think at the level of all of the people, all of the population, and also to recognise that we are effectively stewarding a limited resource. And so I feel very accountable for making sure that we do our very best to make sure that we get the most benefit for the taxpayers health budget. And I think that's my principal job.
As I say, inevitably the budget is fixed. There are more there's more requirements on the health service than we can meet. Um, the example that you, that you cited, for example, about some medicines for dementia recently that we've looked at that we haven't approved because we don't believe on the basis of the evidence that's been presented to us to date, that they achieve sufficient benefit for the cost. And if we were to invest in those medicines, we'd have to disinvest in services that we know are better value for money for the whole population.
It's obviously disappointing for those individuals with dementia, but Nice's job is to think at the level of all of the people, all of the population, and also to recognise that we are effectively stewarding a limited resource. And so I feel very accountable for making sure that we do our very best to make sure that we get the most benefit for the taxpayers health budget. And I think that's my principal job.
10:32
10:32
10:32
10:32
10:33
10:33
Speaker 5
-
Speaker 5
Well, I mean, yes, I mean question I mean, it comes back to your qualities, for example. I mean, the quality of life, of course, is not only the quality of life up to death, but it's also the quality of life after life or during life. And to my mind, that's very difficult to calculate, particularly when so often is the case. Perhaps majority of the cases there are issues with regard to mental ill health, particularly so that actually we might well. Decide to give that particular treatment to a person because, in fact, their mental state or their anxiety degree or their particular living.
And I wonder how you manage that in, in, in in nice terms.
And I wonder how you manage that in, in, in in nice terms.