Jacob Rees-Mogg: Without the Brineura drug, children will die
I am no fan of the quangocracy, but I would not normally accuse it of killing children, but that is what NICE, National institute for health and care excellence has decided to do. It is as if the chief executive, like the hanging judge of old, has put on the black cap and decreed death
This all relates to Batten disease, which is a rare, neurodegenerative condition affecting children, typically starting around age two.
Children progressively lose abilities such as walking and talking.
Average life expectancy is 6–12 years.
Jacob Rees-Mogg has explained what the Brineura treatment can do
|
GB NEWS
Brineura is a treatment that can slow the progression (not cure or reverse the disease).
Eligible children will continue to deteriorate without access to the drug.
We have now learned that NICE – the National Institute for Health and Care Excellence – has announced that it will not be recommending the drug for use on the NHS on the basis of cost effectiveness.
After 31st December 2025, Brineura will only be available to children already receiving the treatment.
Newly diagnosed children with this fatal disease after that date will no longer be eligible for access.
The NICE guidance itself accepts that clinical trials have shown the drug to be effective:
‘The clinical trial evidence shows that Brineura slows progression of CLN2. Patient experts and clinical experts have also explained that cerliponase alfa is a transformative treatment. But there is not much evidence about how well it works long term.’
NICE’s own research gave Brineura its maximum rating of three as the drugs estimated benefits exceed the model used by NICE.
This means that children could have a healthy life, and it buys time for further research.
The logic for not funding the drug is cost effectiveness – so let’s look at the cost.
The NICE guidance puts treatment cost at £522,782 per patient, per year
A handful of children are diagnosed with Batten Disease per annum in the UK, so the cost would be a few million pounds.
NHS spending on diversity roles is at around £40 million
| PA
Now let’s look at things the NHS does deem cost effective:
An FOI from March this year showed The NHS has spent a staggering £250 million over the last five years in England on procedures for transgender, non-binary and gender-questioning patients
In just the first ten months of 2024/25, the cost had already reached £88 million
Healthcare tourism – people coming here from overseas to use the NHS – is believed to cost somewhere between £110 million and £280 million per year.
Treatment provided to foreign visitors is estimated at around £1.8 billion per year – the majority of which is not recoverable.
The NHS confederation’s own website says Current estimates put NHS annual spending on diversity roles at around £40 million.
Without the drug, children will die.
NICE is sentencing them to death.
To deny the drug is to deny children the right to the life they deserve
The Batten Disease Family Association say:
“The Batten community needs full, unrestricted approval of Brineura for all current and future children with CLN2, without cut-off dates and without arbitrary conditions. We will be appealing this decision and urging NICE to correct this course.”
