“Speranza portata via”: le famiglie dei bambini affetti da una malattia rara hanno il cuore spezzato per la decisione del servizio sanitario nazionale sui farmaci – Channel 4 News
https://www.channel4.com/news/hope-taken-away-families-of-children-diagnosed-with-rare-disease-heartbroken-over-nhs-drug-decision
di parallax3900
9 commenti
This is an abysmal ableist decision. I’m so ashamed of NICE.
Before he died, my son received this treatment and amongst the grief, it did provide us some extra time with him, which was beyond anything money could provide.
Now future families like us are going to be denied this choice, because “it’s too expensive” (even though we spaff literally billions in this country).
oh cmon, there are what, 50 kids in the entire UK with this? I appreciate 500k per kid a year isnt chump change but considering the dumb crap this government has tried to spend money on 25 million a year for something the FDA seems to be convinced has signficant benifits to sufferers seems like something we can probably swing.
It’s horrible, but the NHS makes these decisions all the time, such as with cancer drugs.
OP, I’m really sorry to hear about you and your son.
OP, I’m honestly so sorry to hear about you and your son – I cannot begin to imagine what your family and others in the same situation are going through, it’s truly heartbreaking.
You have a point when it comes to NHS wastage and I can understand how that only further feeds those feelings of being let down and abandoned. It’s valid to acknowledge that the administrative failings in the NHS has a very real human cost, and in this case, it’s hope for the future – it’s very human to meet that with anger and should be met with compassion in return.
I know platitudes aren’t worth much but I truly wish anyone in this situation, and yourself, the very best in such difficult times.
I’m so sorry about the impact this will have on your son.
Worth noting NICE publish everything for people to read, anyone can read the entire judgement of this – the only missing/censored stuff is private information or commercial information – there’s still enough to see what their arguments were. The drug was available as part of managed access which seemingly effectively a fact-finding mission to find out if something can be cost effective on the NHS and many managed access drugs do not remain available on the NHS, though it will remain available to those who are already prescribed it.
They’ve since found that it’s not cost effective even with the “confidential discount,” offered to them by the company. It seems the company and NICE both tried to make this viable as possible though even with the cheaper cost of the drug given to the NHS during the managed access period if that had been a long term contract they’d have refused it then as not being cost effective to continue long term.
I’m fully with OP. You know the first-line treatment of severe psoriasis? Methotrexate and ciclosporin. Guaranteed that they will kill your kidney and/or liver and WILL have to be discontinued after a couple months anyway. (If you’re lucky, you won’t have lymphoma and skin cancer later down the line.) Second line, specific, targeted, modern biologics that are actually up to date with current knowledge.
Reason? Money. And money alone. Not safety. Not cautiousness. Not patient benefit. No. Just money.
This shouldn’t be.
Simple as that. This shouldn’t be.
And everyone is automatically right to call this shit out. It MUST be called out. Because it’s morally reprehensible.
OP I feel for you sorry about your child.
There is so much waste and stupid stuff spent on by the public sector. It must be very frustrating to witness that and feel your child isn’t getting help.