|
|
Post by mick on Jun 27, 2024 6:56:39 GMT
I dare not ask the question!
Mick
|
|
|
|
Post by zou on Jun 27, 2024 7:10:29 GMT
Sounds like a really positive good news story, and given life expectancy better value than injections.
I have no idea what question you want to ask.
|
|
|
|
Post by mick on Jun 27, 2024 7:26:10 GMT
Yes positive I agree.
I have to admit to misreading the article. I read the injection route as Ā£200k for a lifetime but it actually says Ā£200k per year for life. Sorry.
However, that only means that I've chosen a bad example. The obvious question is about the point at which treatment becomes unaffordable. It's a question that someone, somewhere, must be asking but any such discussions never enter the public domain - hence the title.
So the question is should such questions be openly discussed?
Mick
|
|
|
|
Post by JohnY on Jun 27, 2024 8:02:45 GMT
The question needs to be answered by whoever allocates funds.
I think it is best that the question is discussed transparently. Based only on the limited information given in the article I would suggest that gene therapies should be available as long as the recipients fully understand the experimental nature. Early recipients, although benefitting may not get as much benefit as later ones as the treatment is refined. Also we need to consider the chances that the cost of treatment will reduce as more people are treated. The process of creating the individual infusions may become routine and less expensive.
|
|
|
|
Post by kate on Jun 27, 2024 8:13:58 GMT
My question is as it always has been. Research always seems to centre on niche conditions and not the ones most people suffer with during their lifetime. Charities spring up to fund rare conditions, but seldom if ever for common illnesses and painful on-going conditions which affect someone's daily life. It's just not sexy to research skin complaints (apart from cancerous ones) or rheumatism and arthritis -- or digestive complaints. These conditions make a fortune for for those offering over-the counter 'remedies' but apart from making those companies a fortune, little or no research is funded to look for a cure. As for mental health? That is an unspoken nightmare no Government wants to tackle.
So, I am not impressed that so much has been spent on this particular condition.
|
|
|
|
Post by MJB on Jun 27, 2024 8:27:07 GMT
Given the fact that current treatment regimes for haemophilia will cost Ā£150,000/PA, before you factor in indirect costs associated with chronic ailments, it doesn't seem that bad a deal. Bear in mind as treatments become more common, the costs come down as well. What you're really saying is I'm not affected by *insert illness here* so we shouldn't be spending money on treating it.
|
|
|
|
Post by spinno on Jun 27, 2024 8:33:50 GMT
I have often wondered how much my cardioverter cost. I've never wanted to look it up because I didn't want to know how much I cost to keep going.
|
|
|
|
Post by kate on Jun 27, 2024 8:43:59 GMT
Given the fact that current treatment regimes for haemophilia will cost Ā£150,000/PA, before you factor in indirect costs associated with chronic ailments, it doesn't seem that bad a deal. Bear in mind as treatments become more common, the costs come down as well. What you're really saying is I'm not affected by *insert illness here* so we shouldn't be spending money on treating it. I'm disappointed you see me in such a selfish light. |
|
|
|
Post by zou on Jun 27, 2024 8:58:19 GMT
Given the fact that current treatment regimes for haemophilia will cost Ā£150,000/PA, before you factor in indirect costs associated with chronic ailments, it doesn't seem that bad a deal. Bear in mind as treatments become more common, the costs come down as well. What you're really saying is I'm not affected by *insert illness here* so we shouldn't be spending money on treating it. I'm disappointed you see me in such a selfish light. I don't think that comment relates to your comment on research/charity etc., is I think is valid. A gazillion cancer charities all duplicating functions whilst few cover certain other conditions. People who question why any expensive treatment is given were more the target, I think. |
|
|
|
Post by zou on Jun 27, 2024 8:58:47 GMT
On the plus side though, there's always money available to bomb people.
|
|
|
|
Post by geoffr on Jun 27, 2024 9:23:31 GMT
A quick search reveals that between 1 in 5000 and 1 in 10,000 of the population are affected by Hemophilia A and 1 in 40,000 with Hemophilia B so, although considered rare there are probably around a million Hemophilia sufferers in the UK population. All will need lifelong medication. If the therapy works consistently and reliably then it might be cheaper in the long term than the current medication.
To Kateās point, I agree that many very common conditions arenāt subject to ongoing research, or donāt appear to be so. Arthritis being one of those, though I know research is happening it isnāt publicised to the same extent as other conditions. Whether research into rare, but serious, conditions shouldnāt be performed, I donāt have a view. The reason being that research in one field can lead to a breakthrough in another, limiting research into an uncommon condition might mean the cure for something more common is delayed, or missed altogether.
I do however have a view on stopping treatment because it is expensive. The moment you decide that treatment is too expensive you bring in eugenics by the back door. I canāt agree to that, every life matters. Maybe if we could learn to live with each other we wouldnāt be so concerned about unaffordable weapons systems, or even affordable ones.
|
|
|
|
Post by JohnY on Jun 27, 2024 9:36:46 GMT
I have often wondered how much my cardioverter cost. I've never wanted to look it up because I didn't want to know how much I cost to keep going. Are they now mass produced? Are there competing manufacturers? That is just the cost of the hardware.
|
|
|
|
Post by spinno on Jun 27, 2024 9:58:32 GMT
I have often wondered how much my cardioverter cost. I've never wanted to look it up because I didn't want to know how much I cost to keep going. Are they now mass produced? Are there competing manufacturers? That is just the cost of the hardware.
So it's about Ā£10k for initial fitting out (2019) battery life is 10 years (expected), so do they replace the battery or device or me? Am I value for money or am I Harry Arter Harry's game |
|
