ENGLISH UNIONIST

If you are reading this, consider yourself lucky enough to still have your sight. A draft ruling by the National Institute for Health and Clinical Excellence (NICE) means that four out of five patients with wet age-related macular degeneration (AMD) – as many as 20,000 people – could be denied treatment to save their sight each year.

For the “lucky” one in five, NICE is proposing that they must first go blind in one eye and only then can they be treated when sight starts to fail in their second eye.

This draft ruling is both cruel and unjustifiable. Everything possible should be done to save sight. The new treatments – Lucentis and Macugen – have the potential to halve the number of people going blind in the UK each year, so everyone who can benefit should be offered them.

Incredibly, this appalling decision has been based solely on the basis of cost. The devastating impact on the lives of thousands of people who will go blind as a result has been ignored, as has the huge cost of providing personal care to those who would not necessarily need it if their sight was retained.

The Royal College of Ophthalmogists has called the NICE ruling “completely unacceptable”. The Royal National Institute of Blind People agrees and needs your help to fight this unfair decision.

You can help in two ways. Firstly, by writing to your MP, asking them to support EDM 1711, which calls on NICE to look again at the evidence showing the need for wider access to AMD treatment. Secondly, by writing to Andrew Dillon, the head of NICE, asking him to reconsider this ill-considered irresponsible measure. Let them know you object to forcing people to lose their sight just to help keep the Government’s books balanced. Remind them that Lucentis and Macugen are freely available in Scotland, and that people in the USA, Australia, France, Germany and Italy, all enjoy the benefits of early AMD care.

It is essential that objections to the NICE ruling are heard loud and clear. NICE will be closing their consultation period on 12 July but that is not necessarily the end of the story. If enough pressure is applied, this outrageous decision could be challenged in the coming months.

Please take a moment to voice your views. To reach Andrew Dillon, please write to Andrew Dillon, Chief Executive, NICE, Mid-City Place, 71 Holborn, London, WC1V 6NA, or e-mail him at nice@nice.org.uk.

Thank you for your support on this urgent issue.

Ian C

This was published some weeks ago on, I believe the 'Does he take sugar' prog radio 4, with the same concerns. Clearly NICE did not take any notice.

I intend to contact Andrew Dillon on the fact
to ascertain his justification.

Ian C

I have now contacted Andrew Dillon.
If he (or anyone on his behalf) reples I'll post again.

TonyG

There was a report on BBC Breakfast News this morning.
It showed an old chap with AMD complaining about the lack of drug treatment and the cost of it.
He was also complaining that he couldn't afford to pay for it.
I couldn't help noticing that he and his missus were also heavy smokers... I guess its all a question of where your priorities are.

__________________
If you don't think you can change the world, who do you expect to do it for you?

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http://www.mercola.com/townofallopat...ofallopath.htm

Ian C

come on tony, promise me you'll buck up...........

in yesterday's Daily Mail
"War veteran leads legal fight over sight drugs"
http://www.dailymail.co.uk/pages/liv...n_page_id=1770

TonyG

Then the BBC report was incomplete.
However, if he has already had four courses of treatment then it shows that Lucentis is not that effective as he clearly still does have a serious problem and it hasn't been resolved with £8,000.
Just another example of drugs companies selling people hope with no refund when it doesn't work.

__________________
If you don't think you can change the world, who do you expect to do it for you?

----

http://www.mercola.com/townofallopat...ofallopath.htm

TonyG

And don't forget the immortal quote from Dr. Allen Roses, worldwide vice-president of genetics at GlaxoSmithKline:


"The vast majority of drugs - more than 90 per cent - only work in 30 or 50 per cent of the people," Dr Roses said. "I wouldn't say that most drugs don't work. I would say that most drugs work in 30 to 50 per cent of people. Drugs out there on the market work, but they don't work in everybody."

Some industry analysts said Dr Roses's comments were reminiscent of the 1991 gaffe by Gerald Ratner, the jewellery boss, who famously said that his high street shops are successful because they sold "total ****". But others believe Dr Roses deserves credit for being honest about a little-publicised fact known to the drugs industry for many years.

http://www.ghchealth.com/glaxo-chief...-patients.html

Perhaps the campaign should be about getting his money back, not hyping up sales for drugs that don't work.

__________________
If you don't think you can change the world, who do you expect to do it for you?

----

http://www.mercola.com/townofallopat...ofallopath.htm

Ian C

"Then the BBC report was incomplete."
"And don't forget the immortal quote from Dr. Allen Roses,...."

Not sure which tangent your'e going.
If a drug:-
- doesn't work for you
- has side effects you can't tolerate
then you stop taking it.

TonyG

If you spent £8000 on a car and it refused to start because it had no engine you would probably want your money back.
Unfortunately that doesn't happen with drugs: if they don't work, no matter how much you pay, it's tough, try another.
As for side-effects: try coming off drugs without your doctor's permission. Once in the system, always in the system.

It's not a tangent either. It's highly relevant. Dennis Devier has paid out for drugs that are claimed to be highly effective, which is why he parted with £8000. They haven't worked or he wouldn't have made the news and the BBC report wouldn't have gone to the trouble of replicating what he sees (or rather what he doesn't see) because of his AMD. The complaint seems to be more that he has spent his own money; it should, however, be more to do with the fact that he wants the NHS to pay for his treatment, even though it hasn't worked. Maybe NICE know a little more about the effectiveness (or lack) of the drugs than others would have us believe.

__________________
If you don't think you can change the world, who do you expect to do it for you?

----

http://www.mercola.com/townofallopat...ofallopath.htm

Ian C

"If you spent £8000 on a car and it refused to start because it had no engine you would probably want your money back"
No I'd check before handing over the cash.

Did this Dennis Devier check anything before he committed his money.
And is he the smoker refered to yesterday.

"try coming off drugs without your doctor's permission"
done it, although you tell him why afterwards.