I fear this fiasco is the shape of things to come

Barney Calman

IF MATT Hancock is ever looking for a career after politics – and who knows, he may well soon be – he’d make a great used car salesman. Orkambi is a four-yearold drug. It was effectively replaced a few years back by a newer version, Symkevi, which is less likely to mean patients are hospitalised due to side effects. But both pills were polished up and presented as if they were the latest, greatest thing by Mr Hancock and NHS England.

Only a few miles on the clock, one careful owner. Just don’t look under the bonnet.

The announcements were classic political sleight of hand – designed to distract attention from the real action that was going on across the Atlantic.

But as patients in America share, via social media, the miraculous effects of the newest drug, Trikafta, this tactic won’t last long. Those who already realise what’s happened are, justifiably, furious. And many more will soon be waking up to the reality that the NHS has bought the ‘wrong’ drug.

Mr Hancock knew full well just how important Trikafta was.

At a Health Select Committee grilling in July, as chairman Dr Sarah Wollaston demanded he give them a deadline for talks over cystic fibrosis drugs, he said: ‘It’s not just about Orkambi, it’s also about the triple... the next therapy.’

So why did they agree to ‘take it off the table’? Was the sudden cave-in, after standing firm for years, simply to score political points? It seems likely, although the fine detail of these deals are kept a commercial secret.

In this context, the tweets showing Mr Hancock hugging cystic fibrosis patients seem particularly disingenuous.

And there is a bigger issue at stake. Senior figures in NHS policy have spoken to me about concerns that this saga signals the shape of things to come.

Britain pumped a record £34.8billion into drug research in 2017, which included Government investment and charity funding. This might seem a lot, until you discover that Vertex alone spent more than £8billion developing medicines over the past two decades, and is still £3 billion in the red because of it.

We invest in science, but not enough. And so private drug firms, which employ some of the best and brightest minds, fill the void. New players, such as Vertex, behave more like Silicon Valley tech disruptors than traditional pharma giants.

They want to innovate, to create game-changing treatments – but they also exist to make a lot of money. And they are, by all accounts, ruthless negotiators.

The breakthrough in targeted therapies for cystic fibrosis is just the start. We could soon see similar breakthroughs for haemophilia and the deadly brain tumour neuroblastoma.

These conditions are rare, but still affect thousands.

The drugs may need to be taken long-term and will undoubtedly be expensive.

ORKAMBI wasn’t worth what Vertex was demanding, most experts agree. But NICE came up with the figure of roughly £10,000 per patient per year for every drug it had to offer, including ‘the triple’ which everyone agreed was showing huge promise.

Pulmozyme, a much older drug for cystic fibrosis, which helps with some of the lung symptoms, costs a similar amount, apparently. No wonder Vertex wouldn’t agree to this kind of figure.

And it knew what it had in Trikafta. NICE’s inflexibility and claims of a ‘global reputation’ seemed just as arrogant.

During talks, Vertex was repeatedly and publicly accused by our politicians and health chiefs of ‘poor practice’ for not ‘complying’ to the NICE process, and told it ‘ought to know better’. And then Dr Wollaston – who really should know better – Jeremy Corbyn and others kept bringing up the threat of stealing the recipe for Orkambi so we could make it ourselves.

It was not the best negotiating tactic, as Vertex has a monopoly on new cystic fibrosis medicines so hold all the aces.

As we speak, the entire NICE ‘mechanism’ for evaluating new drugs is being reviewed, in a process expect to be completed in January 2021.

Funnily enough, this is when Vertex plan to submit Trikafta for appraisal.

And what if, once again, it asks for £50,000 per patient per year, as it has in the past?

Our team has been outplayed, and out-negotiated at every turn so far. New approaches are needed if we are to stay astride of the latest healthcare innovations. Because it’s not dodgy used cars that these cystic fibrosis patients have been lumbered with. It’s outdated drugs for a condition that kills them before middle age.

Sadly for some, whatever happens next, it will all be too late.