Couple Forced To Sell Home After Nhs Refuse To Fund Daughter's Treatment For Rare Illness.

[anotheoldgit]

http://www.express.co.uk/news/uk/576462/Brighton-home-sell-sick-child

Perhaps if she was a non UK citizen and suffering from a self inflicted illness, there would be no problem?

[Sqad]

I am glad that I am not a member of NICE.

Like most controversial aspects of medicine, if you go to our friend the internet, one can easily pick a website to support one's argument.

At best, this drug will not cure her as posted by hc 4361 but will, or maybe reduce the frequency of seizures. Is THAT worth £30,000 per year?

I don't know.

Sorry that my contribution is negative.

However.......other European countries do treat malignant disease more aggressively than the UK......in my opinion.

[whiskeryron]

//
hc4361
This isn't for hospital treatment, it is simply a prescription for the drug. It is a tablet taken once a day with water.

As far as I know there has always been cases where treatment has been refused due to cost versus benefit. This drug is routinely prescribed to save lives. OK then there are obviously parts of the NHS that do not apply to some UK citizens. I repeat we have always believed that the NHS is there for all UK citizens. So I believe that this is the thin end of the wedge whereby gradually the NHS will quietly drift into a service that will eventually not be funded by the state & will have to be paid for by private individuals at the point o delivery.

[hc4361]

Yes, mamya, none of these decisions are taken lightly. When the cost of this drug comes down, as they usually do, then NICE may reverse their decision but only if the benefits outweigh the negatives.

[Mamyalynne]

I'm with Sqad - I would hate the job of making such decisions.

[hc4361]

This thin end of the wedge has been there since the conception of the NHS, WR.

[Hypognosis]

This is the acid test of "do as you want to be done by", isn't it?

30,000 people, who get to their 70s, before they get seriously ill, pay £1/yr each towards her treatment or we sit on her hands and let her die, as she would do, if humans still lived "in the wild"?

Bean counters have more to answer for than bankers, in my book. What part of accountancy qualifications gives them the right to decide who gets made redundant, or who should be made to die?

[hc4361]

Hypognosis, her condition won't kill her whether she has this drug or not.

[Hypognosis]

I need to clarify my point:

Why do we *individualise* the costs of a person's treatment to that person's likely "societal value"? (What are her odds of being a highly-bonused city trader, for instance, which she'd have to be for her subs to amount to 30k, surely?)

Insurance is, by its nature, "group insurance". Some people just die before they get any treatment. Their subs pay for the treatment of others. Pension schemes used to work on the principle that some would die weeks after retiring. That doesn't apply any more.

The US fear of state-controlled healthcare is summed up by their favourite buzzword, which is "death-panels". Which is what we're talking about here, isn't it?

[hc4361]

No, it isn't. People in this country who will die without this drug get it free on the NHS, regardless of their status/value to the country.

[Mamyalynne]

In an ideal world no financial constraints would be put on matters of health - the drug companies could continue to research and discover more and more drugs to treat more and more rare illnesses. They could also charge higher and ever higher prices for those drugs.

With the best will in the world , the pot is not bottomless though.

If it was my child , would I be demanding a drug to help? Of course I would.


If I sat on a panel that decided? I have no idea.

[hc4361]

Mamya, have you seen the side effects of that drug? I'm not sure I'd want it for my child with this little girl's condition.

[Mamyalynne]

No, I am speaking generally not just about one drug.

[hc4361]

Ah. :)

[Hypognosis]

@hc4361

//
Hypognosis, her condition won't kill her whether she has this drug or not.
//

Well, on the one hand that means I've over-played my point but, on the other, the absence of urgency or criticality of the condition makes the expense all the harder to argue in favour of. I'll still try, though.

However, paraphrasing Maggie, it is easy to be generous or magnanimous until you "run out of other people's money".

[bednobs]

how do tehy afford a £400k+ house when neither of them are working and with 3 kids to support?

[Mamyalynne]

The father did work before he had a stroke and brain seizure two years ago.

[sp1814]

A tablet a day costs £30,000 per year?!

Sorry to side track, but even when factoring R&D costs, marketing and distribution, doesn't £82 a tablet seem a little exorbitant?

[bednobs]

that's just medicine for you SP!

[Mamyalynne]

The drug companies when questioned nearly always blame the high costs on these drugs on the huge expense of the research behind them.

We the less educated (well, me) can't easily argue that away, it is frightening really.

[hc4361]

Some drugs do use very, very expensive ingredients.

bednobs, the house wasn't worth that much when they bought it 15 years ago and had no children.