How the media report on NICE decisions

The media tend to focus on individuals when they are considering specific reimbursement decisions. They could be individuals who are patients suffering from the condition in question, or they could be patients who have received the treatment that’s in question. But they tend to patients who’ve benefited from the treatment in question. They don’t tend to be the patients who received that treatment and didn’t benefit. So there’s a bit of a mismatch between the real potential benefits that you would expect to see in a population, versus the way that the media reports, with a focus on the benefits. They also tend not to reflect the fact that those benefits are very uncertain. We don’t know, on average, how well people will do.

And we don’t know which patients will respond to treatments and which won’t. The other thing that tends not to be reported in the media is the safety aspects of new treatments, which, again, are very uncertain. So there is a potential for most - particularly drug therapies - to cause harms, and they’re important to patients, and they tend to be overlooked in the media. They tend to use quite sensationalist language, using military metaphors, like targeted therapies or smart bombs. And they tend to attribute supernatural powers to some of these treatments, as well. There are two main reasons why it may appear that NICE has changed its mind.

They’re both really based on the fact that NICE builds into its processes opportunities to receive new evidence, and to make a preliminary decision, and then to come to a final decision later on. Which many would argue is a component of good practice, a good process for decision-making. The first typical example where they would appear to have changed their mind would be when the initial decision is to recommend the treatment, not for the entire patient population in whom it could have been provided to, so the patient population covered by the terms of the licence.

In that situation, NICE would always issue preliminary guidance, and that allows there to be a period in which new evidence can be submitted by anybody who’s a stakeholder to the process. And that can also include the manufacturer changing the price of the product, which of course would be a pretty important reason for changing a decision. So after all of that additional evidence and consultation has taken place, NICE would then issue its final guidance. And of course, if there were any additional evidence, or a price change that were deemed to be relevant, they might make a final decision that isn’t the same as the interim decision.

So it is a change of mind, but it’s a change of mind in response to additional evidence or very good reasons. The second example where, again there could apparently be a change in the guidance issued by NICE, is built into the process. And that is where periodically guidance will be reviewed by NICE, particularly when there’s new evidence. So that could be several years after the initial guidance was issued. But again, the guidance could change if that evidence made the committee want to come to a different conclusion, and that would be considered to be perfectly reasonable by NICE. Whether we choose to recommend a new treatment or not to recommend it, there are implications for two groups of patients.

There are the patients who will receive the new treatment, or won’t, depending on the decision. And there are those who would be affected by that decision, in the wider NHS, who may have their therapies withdrawn as a result of approving this new technology. So if the decision’s been made in such a way that we believe that the benefits of the new therapy outweigh what we’re going to lose, then that’s a positive decision. Fine. But it’s also a positive decision if we don’t approve a new technology, because we’re insuring that people receiving existing treatment in the NHS are not harmed as a result of saying yes to new technologies. The media never report on the opportunity cost of a decision.

What would we be funding if we weren’t going to fund this new treatment? Who is it who’s going to lose out? So if we fund the new treatment, who are the patients who are going to have their therapy withdrawn, somewhere else in the NHS. Who are the people who are going to die earlier as a result? Who are the people that are going to suffer more as a result? The NHS budget is fixed. We can only do so much with it. For every winner, there’s unfortunately going to be a loser. This is something the media never report.

A NICE committee, when it tries to make a decision, it will be making a decision in light of the evidence that’s available to them. But that evidence is not perfect, so they can only make the best decision they can. Now if later on new evidence comes to light, then it’s quite right that NICE committee will review that evidence and they may come to a different decision. Maybe a new trial has just reported saying that the drug that they didn’t think was effective is now effective, or vice versa. Potentially there are negative aspects to a positive decision.

So NICE will make a recommendation to fund a drug, or a new therapy, if it costs less than about £20,000 per quality adjusted life year. Now that’s fine. And that’s based on an assumption that what’s getting pushed out of the NHS to fund the new treatment is itself costing around £20,000 per quality adjusted life year. So we remain roughly in balance, in terms of overall health. The trouble is there’s good evidence that what’s getting pushed out is only costing £12,000 or £13,000 to get a QALY. Which means that overall, as we move forward, we’re going to become less and less efficient. We’re going to get less and less health for our money.

So positive decisions by NICE can actually be bad for overall health.