Added to this, the Sunday Telegraph recently reported that Accuray (who make Cyberknife), offered to install Cyberknife, and let the NHS use it for two and a half years, free of charge (after which the NHS would be able to buy it interest free), but the Govt declined (even though the Govts expert committee - the NRIG- said it could save in the region of 3000 lives per year).
Just can’t understand why cancer patients are not getting together and fighting this?
You can’t believe what you read in the papers - or online.
Just taking your first example eribulin - NICE hasn’t rejected it (yet) - they released draft guidance in November, then the process is to allow comments to be made - so that if they have got something wrong or the drug company can provide more evidence there is a chance to put it right.
When NICE guidance does come out, in order to satisfy yourself if they have got it wrong or right, you can download the full document (often several hundred pages) in which they go through the studies they used to base this information on. They will often point out why they can’t rely on a particular study or if there is insufficient evidence.
Read that, then point the finger at NICE if you still feel justified. Better still, write to the health journalist on your paper/website and ask them if they have read it.
Actually Alice, I do check my facts.
With regard to Eribulin, the consultation period ended on the 1st December, and if you look at the link I am providing below you can see their recommendations. nice.org.uk/nicemedia/live/13238/57079/57079.pdf
As a matter of interest are you disputing that the other drugs have been banned by NICE? You’re perfectly entitled to defend them if that is your view, but I take a diffent view.
Complicated story but essentially lapatinib is still going through the review process - delay to allow comparison with Herceptin. So you won’t get your treatment stopped or anything (they don’t do that anyway even if NICE “bans” a drug).
Haven’t been on the site for a bit. But seeing Lemongroves comment does make you more alert to what is happening. I have a;lways found Lemongrove well informed so can believe her points are not based on news paper reports alone.
I know people who are or have been on 2 or 3 of the treatments mentioned and am very unhappy about the possible withdraw, yes, I think we should be making more noise, particularly secondary folk where some of these treatments are last hopes.
I haven’t read the papers or Nice reports myself yet so can’t make much of a comment but I do thank Lemongrove for keeping issues alive where we can see them and find out more ourselves
OK with regard to Lapatanib, NICE issued their final determination in 2010, which was that Lapatanib should no longer be prescribed, unless a patient was already on it. Since the determination, the makers of Lapatanib (Roche), have launched several unsucessful appeals, and the latest will be heard in January 2012, and NICE will issue it’s final determination in March 2012. For those who doubt what I have said, I have provided a link to the relevant document below. nice.org.uk/nicemedia/live/11731/49197/49197.pdf
I do understand that Alice Cliche is anxious about patients being worried unnecessarily, but in my opinion people need to be worried.
scroll down to “completed appraisals” for fulvestrant
and to “appraisals in development” for lapatinib and eribulin
The url I have given links to a general page from which is easy to navigate the site, so you know you are looking at the current situation even if you follow this link in a year’s time.
(1 )Alice, are you disputing that NICE have banned these drugs? If so what evidence do you have for that? I am providing links to the NICE Final Appraisal Documents (FAD), for the drugs I have mentioned below, hopefully this will convince you.
With regard to Lapatanib, as I explained in my earlier post, Roche have launched an appeal against the Final Appraisal Determination published by NICE in 2010. Although NICE describe the outcome as pending this does not mean the original FAD does not stand. What it means is that NICE intend to look at evidence provided by Roche to see if there are grounds for lifting the ban.
(2) Mrs Blue, I appreciate that trials are still going on, buty the thread I started is about drugs and treatments that have been banned during 2011. Research into various drugs and treatments is going on all the time.
I am too of the opinion that both Fulvestrant and Eribulin have been rejected by Nice. There is information on these drugs on BCC ‘Our Clinical Statements’ you will see it on the first page (the purple/blue one, the Fulvestrant one is dated 10th Nov 2011 and the Eribulin 17th Nov 2011. As far as Lapatinab is concerned I was under the impression it was no longer prescribed, I am under the Marsden and a colleague of mine needed this drug and the only way she could get it was on a trial, which luckily she was put forward for.
Lemongrove is always well informed and she tries to make us all aware of what is happening, it is not scaremongering she is just informing us and I for one am very grateful. The next drug down the line for me is fulvestrant when letrozole stops working so yes I am extremely concerned.
Hi all, if it helps, I do know of 2 patients who, at the moment, are still being offered Eribulin as their next chemo for early 2012. Alice thank you for the useful page link.
HI, I take Letrozole for bone mets and worry about how long it might continue to work and what is next for me. Put simply, I see it that the more treatment options available to me then the better my chances. I struggle with the amount of information I now need to absorb about all aspects of my disease and its treatment and I really value the posts which highlight issues which may affect me.
Lemongrove, thanks for the information - I must read up before I can comment more.
Best wishes everyone, R.
Belinda, and Sue even though NICE have said these drugs should no longer be prescribed for new patients, they have said they should continue for those already taking them, so maybe some doctors are using that as a way of getting round the ban.
Also Belinda, hope you found my links to relevant NICE documentation helpful as well.
Lemongrove is well informed and I am grateful that she brings these issues to our attention. I was prescribed lapatanib but it didn’t work. My onc might hand it over again as he is a bit creative with funding. He puts me first and then works out how to fund it. I think the attitude of the pct is influential too. My onc is maverick and pushes the boundaries in that I am fortunate. Not all oncs will do that.
X Sarah
Just to re-iterate after lemongrove’s last post asking me a question.
NICE guidance does not come into force until it has been published. It may be that they receive no appeals and the FAD’s marked confidential that you have provided links to, do become the final published document. But they not been published for the two drugs I have been discussing.
This is turning into a pantomime “oh yes it is” “oh no it isn’t” which isn’t helpful. I just urge anyone who reads information about medical treatment to go to good sources of information and published NICE guidance (the full documents) are a good source if the discussion is about what NICE says.