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

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141–150 of 199 posts

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

#141

How exactly do you edit a gene? Like, it is very, very small thing. How do you even measure it, let alone replace it?

Vim or Emacs. But vim is better.

Yeah, if you want DNA littered with ESC, CTRL+c, CTRL+z, CMD+q, CMD+w, ALT+F4...

Don't take the chance, people. Edit your DNA with notepad.

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

#142

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.

Private insurers regularly decide to let people die rather than treat them. Plenty of people also just die because private insurers refuse to cover them because of their inability to afford insurance at all.

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

#143

Earlier quoted context omitted.

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 ca…

Yeah I can see there are many sides, as a society we an interest in keeping elections fair, with one person one vote being a good maxim.

But consider the case of a parent of a child with profound disabilities, that child is now an adult of voting age. Wouldn't a person with disabilities have an interest win voting out a candidate / party who constantly rails against providing funding for disabled services? Why should anyone be disenfranchised because of their disability? Its still one person one vote, just in this special case two adults two votes.

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

#144
post #135

We are truly living in a very interesting time. AI is already "smarter" than a big chunk of the population, Musk's company is expected to land human onto the mars soon, gene therapy is able to cure rare diseases that was unthinkable just a few decades ago, a certain type of colon cancer was 100% cured in a trial. Just shockingly amazing!

Yup! We're still fucked with climate change though. That one isn't fixable.

It is fixable, but it will be expensive and we will pay the (much bigger) price at the latest point possible.

'Only' the mass extinction of species part isn't fixable without clarketech.

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

#145
post #25

Earlier quoted context omitted.

In quality-adjusted life years (QALYs), there is an upper limit to the cost of any intervention because the most you can save from one intervention is one life. If the same money can be used to substantially improve the lives of 100 people with other interventions, then the cost-utility analysis may say a particular intervention is not effective. You might not like the utilitarian approach but this is how the UK meas…

Utilitarian cynism at its best. The humanitarian approach is to save that one live AND improve the other 100 as well. We can afford to do so, because those expensive cases are rare.

This isn't actually true. There are thousands of underfunded causes right now, from rare disease research to homeless treatment programs to education of disabled kids.

If you're spending $4 million on this you're either raising taxes again (and government expenditure is already roughly 50% of gdp in most developed European countries, cant go much higher without destroying the thing thats making the taxes) or you're not rehabilitating 5 homeless people, educating 5 special needs kids and discovering a potential new treatment for 1 rare disease.

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

#146
post #46

Earlier quoted context omitted.

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".

I’d just change the “or we won’t use it” to “or your patents go away.”

The USA really doesn't like it when you ignore their patents.

Expect tarrifs, sanctions and trade secrets so you won't be able to reproduce future treatments.

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

#147

Earlier quoted context omitted.

The problem is, as always, with allocation of resources. If you are running NHS budgets and these treatments cost £1M each(we don't know what price was agreed in the end, but let's say it's £1M per treatment), that's £1.6 billion to treat 1600 kids. £1.6 billion is a lot of money that can save a lot of more than 1600 people if used for other therapies. It's a horrible choice to make of course, but it's the reality of…

That would imply that people are dying right now due to NHS rationing resources, which NHS will never admit to.

I'm pretty sure this has been explicitly stated many many times.

People are dying due to resource rationing and it occasionally makes the news.

Healthcare is expensive and a large proportion of taxes go to it.

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

#148
post #75

Earlier quoted context omitted.

Don't some insurers outright deny cover for chronic or genetic conditions?

People tend to react differently when the learn it's a government bureaucrat making decisions on healthcare. However, people will also howl when they find out it the decision from a cruel penny pinching CEO. These are really difficult problems. How much is too much to save a life?

Hence the NHS calculating £30,000 per quality adjusted life year is what they can afford.

If given more money then that value can go up, but the UK economy is in trouble enough as it is with the state taking half of GDP.

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

#149

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.

Now you're trading off against the defence of Ukraine (for example). How many Ukrainian soldiers lives is this child's life worth?

I think a big problem is you don't currently realise just how many different worthy causes are currently underfunded. At a guess you could probably spend a couple of trillion a year in the UK before you've exhausted most of the nice things that could be done. There are sooooo many good things to do and only so many person hours (which is what money pays for mostly) to do them.

If you did scrap the defence budget then the money shouldn't go on treating these kids but instead should be invested in the surgery backlogs, ambulance wait times and the justice system trial backlog.

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

#150

Earlier quoted context omitted.

It's a very complicated problem, but just printing money usually cause inflation. There is no free lunch.

There is no free lunch but money is not a constraint. Physical resources are a hard constraint. Labour is a hard constraint. Money is not. Inflation caused by excess money supply (NB: not inflation caused by excess money velocity) cannot survive taxation. Taxation destroys money supply. It’s no more (or less) complicated than any of the thousands of other fiscal decisions a government makes every year. There’s a fall…

The real constraint is indeed what that money buys, e.g the aforementioned person hours.

And if you print money and inflate then the price of goods rises. So sure, you might only pay a bit more for the treatment but now fruits are more expensive and your population gets slightly more unhealthy.

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