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

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anotheoldgit | 15:59 Mon 11th May 2015 | News
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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?

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Tuberose sclerosis is a genetic lethal disease for which there is no treatment
It's not lethal, people with that condition have a normal expected life span.
then why treat it ?
Have you read the thread, PP? hc has explained enough times.
This is a dreadful condition, PP. It is genetic and cannot be cured. Although it is not life threatening it is extremely painful and debilitating, in this little girl's case causing her to suffer many epileptic fits daily and awful pain that keeps her awake at night.
@hc4361

//Some drugs do use very, very expensive ingredients. //

I would have thought the most expensive part would be the safety trials, animal then human, followed by the double-blind efficacy testing.

That last bit would be tricky if it is the kind of condition where the occurrence rate is so low that we have to pool patients with other countries to get a group big enough to obtain meaningful efficacy results. International cooperation doesn't come cheap.

Drugs for rare medical conditions will always suffer similar economics to that of luxury cars:- similar design, tooling and launch cost as less exotic designs but fewer units will be sold so the unit cost has to be higher… and, possibly, not come down as time passes because the development cost would have been in the millions (both for cars and medicines).

Brutal as it sounds, the question is whether the NHS remit extends as far as bespoke"one-off" treatments or whether it should stick to common complaints, treatable at a cost commensurate with average worker's contributions?
(Or am I drifting into bean-counter territory myself, now?)

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mikey4444

/// Playing the race/immigration card again I see AOG ! ///

I mentioned nothing about race, but then to some mentioning immigration is racist I suppose, I also never mentioned immigration.

If you must have a dig at me, get your facts right first.
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mikey4444

/// Another attempt at playing the race/immigration card ! ///

Typical response from a supporter of a party which would rather support and protect their own vote source, no matter how much their own country men, women and children are suffering.

Do you have an example of a non-UK citizen receiving treatment of a similar cost for a similar length of time?
Question Author
ummmm

/// I think it's aimed at the OP. ///

Get your facts right

Fusion5 16:35 Mon

*** Poor kid. Perhaps if we stopped giving free treatment to overseas freeloaders who have paid nothing into the NHS, the purse may be a little fuller. Sadly this Will never happen. ***

mikey4444 16:37 Mon

*** Another attempt at playing the race/immigration card ! ***


On saying that AOG, If she wanted bigger tits & your a rollop from leads, that wanted the world to see her giving birth, the NHS would have wavered the cost, I worked for the NHS & this is terrible.
And if you'd read the thread properly, AOG, you'd see that Fusion had already pointed that out!!!
That should be Trollop & Leeds.
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ummmm

/// And if you'd read the thread properly, AOG, you'd see that Fusion had already pointed that out!!! ///

I read past posts in order and answer them individually, before moving on.
An example of an INDIVIDUAL?
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Disturbing to note that some would rather attack my non-UK citizen stance than address this families desperate plight.

And they call the Tories the 'NASTY PARTY'.
Question Author
THECORBYLOON

/// An example of an INDIVIDUAL? ///

Take your choice, there are thousands of individuals there.
Give an example then.
Peter pedant

\\\\then why treat it ?\\

Because it reduces the frequency and severity of the epileptiform seizures.

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