If sick toddlers can’t rely on the NHS, the system really is finished

We are living in an age of wonder drugs. Donanemab, a drug for Alzheimer’s disease which is under review, has been hailed as a “turning point” for being able to treat dementia effectively. Ozempic is giving the obese another shot at a more active life. 

And then we have Kaftrio and Kalydeco: drugs which are currently given to people aged six years and older to help fight cystic fibrosis. When combined, they have been found to add years and sometimes decades to patients’ lives.

Cystic fibrosis is a disease that, 30 years ago, gave you a life expectancy in the 30s. While still too short, thanks to medical innovation these figures are improving: babies born with the disease between 2018 and 2022 have a life expectancy of 56 years, according to the Cystic Fibrosis Foundation. Those born after 2021 are now estimated to live beyond 65 years old, inching closer to the average UK lifespan. 

It’s a story of progress, and one that will keep improving – unless the UK’s healthcare bodies decide to turn back the clock. The medicines regulator has just licensed the two drugs to be administered to children from the age of two. The opportunities are immense, not only to extend lifespans but to relieve the symptoms and suffering of the country’s smallest patients. 

Yet instead of extending provisions, the National Institute for Health and Care Excellence may be looking to take the treatment off the table. According to the first draft recommendations from NICE, published earlier this month, the body does not consider Kaftrio to be “cost effective” and looks set to recommend that it not be provided by the NHS for future patients.

It’s not the type of language NHS loyalists like to admit to: the benefit of a single-payer system, they insist, is that money isn’t part of the equation. But of course it is. 

One of the most erroneous defences made in favour of the National Health Service – apart from the claim that it’s the “envy of the world” – is that it provides universal access to healthcare. In principle, sure: everyone living in the UK has a right to access the NHS, regardless of their ability to pay. But in practice, people are triaged, waitlisted, and if you eventually get through the door, denied certain treatments due to “cost effectiveness” assessments. 

NICE is constantly making judgments around “quality-adjusted life years” (QALYs) from a utilitarian perspective. But even accepting that the NHS is a rationing system at its core, what NICE proposes to withhold from new patients with cystic fibrosis is nothing short of a scandal.

It wasn’t so long ago that QALY assessments went out the window during the pandemic. As we discovered recently through the Covid Inquiry, former prime minister Boris Johnson was ineloquently making this point back in 2020, as NHS services were being cancelled across the board. Young and sick people were discouraged from seeking healthcare in an effort to protect the elderly.

That was not necessarily, in every circumstance, the wrong calculation. But how have we ended up in a situation where treatments are now getting cut for the youngest and most vulnerable Britons, who in theory have their whole lives ahead of them?

The answer is all too familiar: the politics of the NHS. The health service is not short of cash right now. NHS England’s budget this year is a staggering £169 billion – on track to account for 44 per cent of all day-to-day public service spending in the next few years. 

The NHS budget has always gone up in real terms since the Tories took power in 2010, but it has skyrocketed since the pandemic, jumping roughly 14 per cent in real terms between 2019 and today. But loyalty to the current system means that those additional resources are almost guaranteed to flow towards emergency care rather than preventive care. 

Everyone says they want “prevention” to be at the heart of NHS strategy, yet the decision to keep funnelling money into a monolithic beast – rather than empower patients to pick and choose their care – suggests this remains a buzzword for most, rather than a serious strategy.

Furthermore, an ageing population – and the refusal among politicians to admit what this means for a single-payer system – guarantee that funding needs to go up and up to cover their care. 

Of course, it doesn’t have to be this way. Most countries don’t rely almost solely on taxpayer money to cover their healthcare costs, leading to tragic trade-offs that will increasingly pit vulnerable groups – like the elderly and toddlers – against each other. It’s a choice politicians are making not to look to the UK’s neighbours and consider reforms that get the NHS back on track towards a real universal system.

It’s a choice on NICE’s part, too, to deny Kaftrio to future generations. Thankfully, they still have the opportunity to revise their recommendations, and make a better decision.