Petition for tyverb - Page 2

Laurel · 03-19-2009, 05:42 PM

That is so discouraging.

tricia keegan · 03-19-2009, 05:43 PM

Laurie, looks like 244 so far!

tricia keegan · 03-19-2009, 05:45 PM

Oops must have crossed when posting just then but I agree, thought there would be more by now. How about Facebook?
is it there does anyone know?

tricia keegan · 03-21-2009, 01:38 PM

Okay, it is now

karenann · 03-21-2009, 02:02 PM

I signed the petition.

Karen

Laurel · 03-21-2009, 06:29 PM

Any updates on the petition? I sent it out again and hope some of my pleas worked. I'm not getting very far with trying to get news coverage of your petition over here. Are you trying to get coverage in your country? Of course, if only a handful sign it they won't take us seriously. Man, this is frustrating!

fullofbeans · 03-25-2009, 11:45 AM

well not been involved much as felt quite down after hearing the news that a incredible woman(not sure she wants me to say who) who was on my trial has recurred..

After 2 years as NED sometimes you think that chances are increasing because I seem to have noticed that stage4 tend to recur within two years if they do, so it was a shock and I needed to escape this board for a while to find some peace of mind..

We have 325 signatures so it is still increasing..

schoolteacher · 03-25-2009, 11:56 AM

Full of Beans,

Sorry to hear that you have been sad. Hope your friend is doing o.k.

Amelia

03-25-2009, 01:35 PM

I have been in contact with NICE and this is their reply:

Quote:

Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).

Apologies for the delay in responding to your email.

I understand you are referring to the final draft guidance (known as a final appraisal determination, or FAD) issued for 'Lapatinib for breast cancer (for use in women with previously treated advanced or metastatic breast cancer)'.

The FAD has been sent to the formal consultee organisations for this appraisal, who have 15 working days to consider whether they wish to appeal against it. The appeal period for this appraisal will close at 5pm on 27/03/2009.

An appeal may be made by any of the consultees to the appraisal. Individuals are unable to submit an appeal.

Subject to any appeal by consultees, the FAD may be used as the basis for the Institute's guidance on the use of the appraised technology in the NHS in England and Wales.

Basically what this says is that they will not take any notice of anything from anyone other than the people who were originally consulted in arriving at this decision. So this petition will have no effect on NICE.

What is desperately needed is every single UK resident who has signed this petition to contact their Member of Parliament and ask that they get involved in trying to get the Government to do something about this. There has been a lot in the papers recently about how bad the UK is for cancer survival - the UK is not much better than 3rd world countries - so this should wake them up a bit.

Somehow this has to be brought to the attention of the mass media here in the UK because until we get this I doubt that there will be enough folks signing any petition to have much effect. I also feel that the right place for a petition such as this was the UK Government petition website, but even if it were there it is the oxygen of publicity which is needed to get the ball rolling.

So please every UK resident contact your own local MP, my wife has done this and he has promised to raise it with the Health Secretary and reply to her. If every UK person does this we might just start something, but it needs every one of you to do it and do it this week.

janieR · 03-25-2009, 01:46 PM

By the way the unregistered guest comment here is from my husband

He got this reply from Nice today. How convenient it is so near to Friday, the deadline!!

Janie

Snufi · 03-25-2009, 05:05 PM

Do you guys see what could happen to us if we get National Health Care? What happens if it is determined Herceptin which costs around 10,000.00, is not approved for us that need it.

Snufi

Laurel · 03-25-2009, 05:52 PM

Yes, Snufi, that is one reason I am trying to get this covered in the media over here in the States. This is terrible for patients in the U.K., absolutely cruel. It is equally disturbing that this is what is coming our way!