UK NHS: dead babies are more cost effective

[Jwheel86]

Best article I could find:

https://endpts.com/biogens-big-breakthrough-drug-spinraza-runs-into-a-barrier-as-nice-turns-thumbs-down-on-reimbursement/

 

The UK has decided not to cover Spinraza, the first drug to treat Spinal Muscular Atrophy (leading genetic cause of infant death), even in cases where the drug can prevent symptoms entirely. They argue there is no long term studies and no evidence it will save NHS money. I'm not surprised they aren't covering it in adults, there you can kind of make an argument, but not covering kids, including "dead before 2" Type 1 kids is mind blowing cruel. 

[Commissar SFLUFAN]

Oh boy - there is no doubt in my mind where this will be rabidly seized upon with joyful glee.

[gamer.tv]

I think arguing that there is no evidence or study of the drug is a valid reason for not making use of it.  Considering how little money the NHS has at the moment, i can appreciate that whilst some decisions are very hard to make, they would need to focus on what they know will work, without future detriment to patient health. 

 

"But without a better idea of the longterm impact of the drug on patients, some of whom face a death sentence at the age of 2, it wasn’t possible to conclude that the price was justified."

 

 

[Jason]

40 minutes ago, SFLUFAN said:

Oh boy - there is no doubt in my mind where this will be rabidly seized upon with joyful glee.

 

[Commissar SFLUFAN]

57 minutes ago, Jwheel86 said:

I'm not surprised they aren't covering it in adults, there you can kind of make an argument, but not covering kids, including "dead before 2" Type 1 kids is mind blowing cruel. 

From my perspective, the reverse argument makes more sense: cover the adults who have the opportunity to more immediately benefit society.

[Jwheel86]

36 minutes ago, gamer.tv said:

I think arguing that there is no evidence or study of the drug is a valid reason for not making use of it.  Considering how little money the NHS has at the moment, i can appreciate that whilst some decisions are very hard to make, they would need to focus on what they know will work, without future detriment to patient health. 

 

"But without a better idea of the longterm impact of the drug on patients, some of whom face a death sentence at the age of 2, it wasn’t possible to conclude that the price was justified."

 

 

I think it depends on how you define long term, the FDA studies are pushing 4 years and none in those trials have declined or even plateaued in terms of gaining milestones. Kids who'd be on trachs by now are walking. 

[Jwheel86]

7 minutes ago, SFLUFAN said:

From my perspective, the reverse argument makes more sense: cover the adults who have the opportunity to more immediately benefit society.

What's weird is adults are shut out of the clinical trials for that reason,they don't want to risk screwing up an adult.