What price life?

[Dod101]

Seeing the little girl who has been given a life via new gene therapy, I think most would answer 'Any price', but £2.8 million? I think though that rather than emphasising the cost of this treatment we should be rejoicing in the ability of medical science to carry out this sort of thing. Whether this should be a charge to the NHS I am not so sure. I wonder how they arrived at that cost anyway because extracting stem cells is a well documented and apparently not difficult task. I watched my late wife having that done and it did not take long with what looked to me like a blood dialysis machine. I have no idea how they go about cutting out the faulty gene; that is the magic, but again reinstating the stem cells is a well proven technique. Are they likely to have been feeding into that cost some of the research costs?

Can anyone who knows more about this shed any light ?

Incidentally I thought the parents behaved with great dignity and graciousness in the light of what has happened to their daughters. What an appalling situation to be in. One daughter is able to be given the chance of a normal life; the other condemned to die before long.

Dod

[GrahamPlatt]

https://en.wikipedia.org/wiki/Value_of_life

https://en.wikipedia.org/wiki/Quality-a ... _life_year

being this is pretty much a whole life. - from infancy to old age - lived without infirmity, £2.8m makes the cut.

[servodude]

The first few of anything "new", especially like this, cost mega bucks.

Part of that will be because the research or "non-repeated engineering" is included (possibly averaged over few sample points) and also because it is novel, rare and risky.
....and also to a good degree because when it's published for public consumption it's about creating a story rather than auditing the process.

For an example of how that changes you'll find a chart with the historical cost of sequencing a genome in this article
https://www.weforum.org/agenda/2019/06/today-you-can-have-your-genome-sequenced-at-the-supermarket/

-sd

[doolally]

Seeing the little girl who has been given a life via new gene therapy, I think most would answer 'Any price', but £2.8 million?
Dod

I heard it reported yesterday that the NHS had negotiated a significant but undisclosed discount from the £2.8m
doolally

[monabri]

Depends what one does with the life. Become the next Putin or someone who contributes to a better society.

[Fluke]

I hadn't heard about this case but stem cell transplantation as you say has been round for a while, it's used as a treatment for MS, known as autologous haemopoietic stem cell transplant or AHSCT. Rarely available on the NHS due to the cost and less risky treatments being available, but it can be done privately in the UK at a cost of about £90k or you can go abroad to places like Moscow (although not lately), Mexico and India and get it done for half that.

The disease in the case of the little girl is metachromatic leukodystrophy (MLD) which a quick google tells me is not that dissimilar to MS in that the myeline sheath (which coats nerve cells) breaks down all be it for different reasons. So the different is cost must be to do with what they do with the stem cells in-between removing them and transplanting them back.

Very interesting and if it paves the way for a cure for diseases such as these it'll be well work the cost.