Putting a price on a life seems cold and ethically challenging but from a purely pragmatic point of view that is what government’s have to do to ensure money is spent wisely. This is particularly true in healthcare. NICE has a figure of £30,000 for each QALY – quality adjusted life year. Each year of healthy life is valued at more than each year in suboptimal health. Children have huge amounts of QALYs ahead of them so ought to be a great investment. However, there is a huge chasm between decisions made about saving the lives of children and how much can be spent on covid care.

In 2012, Neon Roberts, aged 5, had a brain tumour surgically removed and was scheduled for radiotherapy and chemotherapy. HIs mother knew that radiotherapy would lead to harm and wanted to explore treatment with proton beam therapy. The courts decided that he should have the treatment and after fleeing and hiding at a friend’s house, the police seized him from his home at 2am. He thought he might never see his mum again. He was given the radiotherapy and now has a squint and chronic fatigue. His mother’s fight was dismissed, but years later, proton beam therapy became available on the NHS. Was her intuition wrong, or was the system too rigid to listen to a mother’s plea?

There is a massive gulf between parents who act to harm or neglect their child and those who disagree about what is the best treatment for their child. The courts sometimes fail to recognize that loving mothers—and fathers—often have their child’s best interests at heart.

Cases like Charlie Gard and Sudiksha Thirumalesh illustrate this tension. There have been a number of high profile cases of children who were dying where the NHS refused to fund their treatment. Charlie Gard’s parents raised over £1.3 million to treat his rare condition in the US. The doctors did not think he would benefit and on the basis of that opinion his life support was withdrawn.  Sudiksha had the same rare condition as Charlie though with a much slower progression and was 19 when her life-support was switched off against her wishes and after her family had also raised enough money for her to go to the same US centre who had agreed to treat Charlie.

There are stories with a happy ending where the parents did manage to fundraise and seek treatment abroad. You might remember, 5 year old Ashya King who was denied a life saving treatment costing £65,000. His parents smuggled him out of hospital onto a ferry to France and were arrested and put into a Spanish jail before an outpouring of support from the public made the authorities change their minds. He survived and is now 15 years old. 

The table below highlights other children whose parents fundraised for treatments that the NHS refused to fund.

Year	Name	Age	Condition	Treatment	Amount Raised	Outcome
2014	Ashya King	5	Medulloblastoma (brain tumour)	Proton beam therapy (Prague)	£65,000	Survived
2018	Zac Oliver	4	Near Haploid Acute Lymphoblastic Leukaemia	CAR-T therapy (USA)	£500,000	Survived
2017	Alexander Goodwin	9	Ewing’s sarcoma	Proton beam therapy (USA)	£200,000	Survived
2021	Eden	6	Neuroblastoma	Treatment in the USA	£500,000	Survived
2019	Oscar Saxelby-Lee	5	Acute Lymphoblastic Leukaemia	CAR-T therapy (Singapore)	£700,000	Survived

It’s important to recognize that not every story ends in survival. The table below illustrates cases where treatment, though fought for and funded, was unsuccessful (even if their life was extended which is harder to know). 

Year	Name	Age	Condition	Treatment	Amount Raised	Outcome
2014	Margot Martini	2	Acute lymphoblastic and acute myeloid leukaemia	Bone marrow transplant (UK/USA)	£150,000+	Died 2014
2018	Lily Douglas	11	Ewing’s sarcoma	Alternative treatments	£100,000+	Died 2023
2021	Jude Mellon-Jameson	5	Neuroblastoma	Treatment in the USA	£236,000	Died 2023

Let us be generous and assume this is not a comprehensive list and that there was only a 50% chance of success. That still leaves the costly treatments at between £100-500k, that was denied by the NHS, in the same ballpark as what is being spent in a vain attempt to prevent a single hospital transmission.

The latest JCVI estimates for the number needed to vaccinate to prevent a hospital admission is based on data from last winter. The usual biases around the baseline risk of the unvaccinated population and underestimates of the size of that population apply. Yet, they have convinced themselves of a number needed to vaccinate to prevent a hospital admission. Given that during the mass rollout, with the economies of scale that included, it was estimated to cost £25 per vaccination. The companies have since increased the price but with no other overall estimate we will be conservative and stick to the £25 measure. The cost to prevent a single hospitalisation is listed below with those eligible for an autumn booster highlighted in yellow. These figures dwarf the amounts denied for life-saving treatments for children.

Figure 1: Number needed to vaccinate to prevent a single covid labelled hospital admission for those at no clinical risk (left hand side) and those with a clinical risk factor (right hand side) alongside cost.

The cost-benefit decisions that drive NHS spending can be hard to reconcile. On one hand, loving parents face roadblocks from courts and medical experts when seeking life-saving treatments for their children. On the other, vast sums are spent on COVID-19 interventions, raising the question: What is a life truly worth, and who gets to decide? Shouldn’t loving parents have more say when the stakes are so high?