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First UK child to receive gene therapy for fatal genetic disorder is now healthy

livescience.com

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Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#31

Post by Gordonjcp »

themaninthedark wrote: post #23
jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

And this in turn leads people to be against national health care as they are worried that the government will be the one making the decision that it is cheaper to let people die rather then treat them.

As opposed to insurance companies making the decision that it is cheaper to let people die than potentially adversely affect shareholder value by treating them?

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#32

Post by HlessClaudesman »

ls612 wrote: post #15
jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

[flagged]

I think a full time caregiver of someone incapacitated should have the power to vote on their behalf. This is a big chunk of society, yet seemingly invisible to politicians. Perhaps, if people with disabilities and illnesses couldn't be just ignored as "non voters" they would be more of a priority.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#33

Post by Gordonjcp »

shadowgovt wrote: post #27
cameronh90 wrote: post #12

Earlier quoted context omitted.

What if the cost was $100 trillion?

Its sticker price is actually $3.8 million. At that price, it could be administered to every child in the UK with the disease at about the cost of 1 year of the UK's defense budget.

It's probably cheaper if you're buying it in that sort of quantity. Three million quid on this, three million quid on that, three million quid over there, soon you're talking about a lot of money.

If you buy 1600 doses of it at a time they're going to sharpen the pencil for you.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#34

Post by mrtksn »

shadowgovt wrote: post #27
cameronh90 wrote: post #12

Earlier quoted context omitted.

What if the cost was $100 trillion?

Its sticker price is actually $3.8 million. At that price, it could be administered to every child in the UK with the disease at about the cost of 1 year of the UK's defense budget.

What happens if UK requires defense that year?

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#35

Post by gambiting »

ls612 wrote: post #15
jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

[flagged]

That's such a reductive, dismissive take on the issue it's actually offensive towards everyone in this country trying to make the healthcare system work. The government isn't ran by some cartoon villains, and the resources at NHS's disposal are finite - I certainly don't envy anyone whose job it is to make sure they are allocated in the most efficient way that also saves the most lives.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#36

Post by vkou »

jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

> Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper.

That's the same sort of ethical calculus that goes into deciding the distribution of any life-saving resources.

We can always spend more (resources/social capital) to save more lives/years of life. How do you decide where that line gets drawn?

Most medical systems decide it by looking at the cost of treatment (Dollars, organs, risks), and quantifying years of quality life gained. If you'd like that bar raised, increase the tax rate/insurance costs.

'Save every life at any cost' is not compatible with a world where you have decide whether your budget goes on a low-ROI, or a high-ROI intervention. 'First come-first-serve' is not compatible with a world where you are optimizing for overall positive outcomes.

Do you have any alternative guiding principle for where money in the healthcare system should be spent?

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#37

Post by ryeights »

themaninthedark wrote: post #23
jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

And this in turn leads people to be against national health care as they are worried that the government will be the one making the decision that it is cheaper to let people die rather then treat them.

Such power is already vested in undemocratically governed private insurance companies, no? I can’t imagine any health insurance plan would have covered this treatment.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#38

Post by sn0wf1re »

elil17 wrote: post #24
whiddershins wrote: post #13

Earlier quoted context omitted.

Doing the procedure has a cost. There must be some pressure to reduce the cost, else it will never reduce.

I agree there needs to be pressure. Why not regulatory pressure?

What sort of regulation? Make it cheaper by x% per year or we stop using it? Doesn't sound that dissimilar to "make it cheaper than the total cost of the current treatment or we won't use it".

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#39

Post by gambiting »

HlessClaudesman wrote: post #32
ls612 wrote: post #15

Earlier quoted context omitted.

[flagged]

I think a full time caregiver of someone incapacitated should have the power to vote on their behalf. This is a big chunk of society, yet seemingly invisible to politicians. Perhaps, if people with disabilities and illnesses couldn't be just ignored as "non voters" they would be more of a priority.

But....they can? You can give someone else the power to vote on your behalf if you cannot do it yourself. Unless you mean that if someone is literally unable to make any decisions by themselves their caretaker should be able to vote on their behalf how they think this person would vote? That doesn't strike me as a very reasonable system, you can't know how someone would vote unless they tell you, and to assume you can or should know is irresponsible.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#40

Post by TSiege »

themaninthedark wrote: post #23
jiggawatts wrote: post #5

https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment." Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper .

And this in turn leads people to be against national health care as they are worried that the government will be the one making the decision that it is cheaper to let people die rather then treat them.

Except that reality is you vote for government, not for the health insurance industry
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