pleased to join you in this. Well done everyone who bothered and hope we never need it
Love to all
A few days ago it was Nexavar (liver cancer), now it's Avastin (for bowel cancer and probably others in the days to come:
Shame on you, NICE.
Please keep signing, everyone.
Giving this ANOTHER bump and pasting link to a piece Karol Sikora has written for the Daily Mail today:
And don't forget.....
Well, having read today that NICE have decided that Nexavar (liver cancer) is too expensive, this thread definitely needs another bump.
Hi Elinda, yes I have done a few interviews for BBc Breakfast - terrifying! Just hope I can give you all good advice for your campaign.
The point raised about the free 3 months is that once you can show clinical benefit you can appeal to the PCT for continuation funding on that basis, very hard to refuse a cancer patient clinically effective treatment.
The picture is of my left shoulder. It is covered in Kinesio tape; a treatment for lymphoedema.
I post a lot on the lymphoedema threads and I've temporarily changed my avatar to show the tape, as it has come up a lot in discussion recently.
Bahons2 - Just trying to work out what your photo is.
Hi Kate (Willowrose)
What you're doing is fantastic. Did I see you recently on breakfast television?
Will you keep checking the site because I'm wondering if something comes up for someone in the future and they need your help how they would contact you?
Christine - I agree with you that it's beyond appalling how the banks are being bailed out and services such as NHS will end up having to pay.
take care all
250 patients! How do you find time for it all? It sounds like a full-time job.
I can see the point of the rebate, although doesn't the drug start costing after those three months, so it can't honestly be described as free.
The PCTs are the really tough nut. The problem is the government has spent so much bailing out the high street *ankers and generally mismanaged things to the point that everything seems to be getting a 10% chop, even the police.
Thanks for thats information, that's really useful. You are doing a brilliant job, thanks very much.
Hi, new member here - I have just signed the petition and let's hope many more do. I joined as I am helping a lovely lady access Lapatinib from her PCT who refused her the treatment last month. I was heavily involved in campaigning for the kidney cancer drugs to be NICE approved last year - the negative decision was overturned so it can be done. All this began for me when my mum was denied a new cancer drug (kidney cancer) in 2007 - I won her case and have gone on to help over 250 cancer patients beat their PCT when applying for a new treatment - mostly I have been dealing with rarer cancers - but in the past year I have been working with breast cancer patients and have helped them access Avastin and as stated have now my first Lapatinib patient. So I have spent the past week researching the history of the NICe decision and what this means for patients. I thought it was really important to share with you what I have found out...
NICE did issue a final decision in the summer - but this was successfully appealed against and the decision will now go back to panel - so PCT's cannot refuse treatment due to NICE - as there is no final decision - oncologists can apply individually for patients under the PCT's "Exceptional case panel".
The company that makes the drug is offering PCT's a rebate for the first 3 months treatment - essentially it is free - so it is nonsensical for PCT's to refuse a free drug and a good angle for appeal. I am finding out more details of this but apparently at least 25 PCT's have taken up this offer.
I will have further information soon - but thought for now I'd update you on where I am with it all - anything I can do to advise or help please contact me and I'll do all I can.
I posted this on the Macmillan site as well.
I'm not sure that many people are spotting it because, as with these forums, the boards are very fast moving and it slips down quite quickly - it needs very frequent bumps.
Also, the Macmillan site has recently been revamped and seems to be a bit of a shambles; it's very, very difficult to find anything on there.
BC pals, yes, it would be worth posting there, too.
BC Pals? Macmillan? I put a poster up in the Ladies at my hospital:-)
It's 612 now. Does anyone use any other forums on which they could mention it?
bumping this up. here's the link again
Just signed. This is very important to me too as my Onc is in the process of trying to get it for me.
I've also put a post on my facebook profile page urging people to sign xxx
Hi,signed petition.I am currently on Lapatinib trial with Taxol and Herceptin i am struggling with certain side effects but i understand the benefits with the way this drug crosses the blood brain barrier so am going to persevere for as long as poss.It maybe because i have Lupus aswell and i am on medication that the side effects are more pronounced,we will see. It is so important to have the access to these drugs unconditionally!!!!!
Just signed it as starting a trial and can either be assigned herceptin or lapatinib so will see what my fate is.
Good luck all.
That's great! Someone said that if 500 people sign a Downing Street petition it has to then be taken into consideration. I hope that's so.
J - The deadline is 23 Oct 2010. It is up to 497 now. Nearly there! Is there anyone else on here who hasn't signed yet?
Thanks for this. I just signed, but afterwards noticed it said deadline was 23rd Oct! Well, it said '23rd october - ' does that mean it is ongoing? That looks more like the start date. I'm confused!
They will notice if you have used the same e-mail address. From what I read they only accept one signature per e-mail address.
signed again and passed it on again, no one will notice..... used my middle name this time,
keep well xxx
At start of my treatment I was given this drug as part of a clinical trial to see if it would help newly diagnosed BC patients and to try to see why it worked in some people and not others (so lots of bloods taken for genetics).
In my case it shrunk my grade 3 growth by almost 2/3 in 4 weeks.
Therefore in my opininon for those on whom it works it should be considered a MUST have treatment.
Just bumping up. Petition is now at 350. Here's the link again:
Do pass on to all your family and friends.