IF YOU CAN READ THIS, CONSIDER YOURSELF LUCKY!

TonyG · 10-07-2007, 10:06 AM

Yes he was the same man in the interview and the Mail.
We have dealt with a large number of people who have serious conditions that are being made perceptably worse by the prescribed drug regimes. Unfortunately in all cases the consultants have refused to consider changing or discontinuing them, always citing the mantra that 'coming off them could kill you', in spite of the fact that staying on them was achieving the same result. Hey ho.The same patients have also been threatened with exclusion from the patient lists if they take their own decisions in contravention of the doctor's/consultant's directions. Stuck between a rock and a hard place.

When someone like Dennis has a condition like AMD and his doctor recommends a treatment and the advertising bumf from the drug company backs it up - in this instance Genentech who also make Avastin, another bl**dy expensive drug being touted for everything - then he is likely to take that as being sufficient for making a decision.

Ian C · 13-07-2007, 10:43 AM

This has managed to make it to BBC Wales

Ian C · 18-07-2007, 10:44 AM

No reply from Mr Andrew Dillon @ NICE, so yesterday sent him a letter.
(see my post 9 July)

At least someone has got treatment.

Ian C · 23-07-2007, 10:11 AM

Got a reply from Mr Andrew Dillon @ NICE last week.

Apart from the header etc. the letter is unedited:

Quote:

Thank you for your email concerning the Institute’s draft guidance on the use of Lucentis and Macugen for treating age related macular degeneration.

I know that these proposals have disappointed many people living with this distressing condition, as well as those who care for and who treat them. Our independent advisory committee used the results of clinical studies carried on these drugs to guide them in making their recommendations. It’s these studies that were used to obtain the licenses which allow the drugs to be used in the first place and which enable us to compare them with other treatments. Our job is find out whether Lucentis and Macugen are any better than current treatments, and if they are, whether the cost to the NHS is reasonable, given all the other treatments which have to be provided to everyone else. When treatments are very expensive, we have to use them where they give most benefit to patients.

What you say does matter. Because we have had so many similar comments from individuals we will be bringing them together and summarising them before they are put to our independent advisory committee. Whether or not the final guidance is different from the draft recommendations, the members of the committee will be fully aware of what you and others think about this important decision.

The closing date for the consultation on this draft guidance has now passed but please be assured that your comments will be passed on as they were received before the deadline. The final guidance is expected to be issued in November 2007.

Yours sincerely,

Andrew Dillon, Chief Executive

The corollary -
-Yes cost does matter
- it was worthwhile writing to the Chief Executive

Ian C · 09-08-2007, 01:01 PM

Quote:

Dithering over NHS drugs could leave 10,000 blind

in the Daily Mail

Quote:

Up to 13,000 patients, campaigners and doctors had protested at the ruling, claiming thousands would lose their sight as a result.

But the review announced by NICE yesterday will take another six months - in which time at least 10,000 people could lose their sight, according to campaigners.

TonyG · 09-08-2007, 01:03 PM

Quote:

Dithering over NHS drugs could leave 10,000 blind

That's making a massive assumption that the drugs work for at least 80% of people. They don't. As usual, the headlines don't match the facts.

10-07-2007, 10:06 AM	#11 (permalink)
TonyG Uber Member Join Date: Jun 2005 Posts: 2,589	Yes he was the same man in the interview and the Mail. We have dealt with a large number of people who have serious conditions that are being made perceptably worse by the prescribed drug regimes. Unfortunately in all cases the consultants have refused to consider changing or discontinuing them, always citing the mantra that 'coming off them could kill you', in spite of the fact that staying on them was achieving the same result. Hey ho.The same patients have also been threatened with exclusion from the patient lists if they take their own decisions in contravention of the doctor's/consultant's directions. Stuck between a rock and a hard place. When someone like Dennis has a condition like AMD and his doctor recommends a treatment and the advertising bumf from the drug company backs it up - in this instance Genentech who also make Avastin, another bl**dy expensive drug being touted for everything - then he is likely to take that as being sufficient for making a decision. __________________ 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

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13-07-2007, 10:43 AM	#12 (permalink)
Ian C Senior Member Join Date: Oct 2006 Posts: 695	This has managed to make it to BBC Wales

18-07-2007, 10:44 AM	#13 (permalink)
Ian C Senior Member Join Date: Oct 2006 Posts: 695	No reply from Mr Andrew Dillon @ NICE, so yesterday sent him a letter. (see my post 9 July) At least someone has got treatment.