100000 signatures asap please

[Ludensian Gull]

Done

 

[The Sock of Poskett]

Done - hope things work out

 

[Wrong-Direction]

Another here

 

[Zebedee]

Done x 2.

 

[aolstudios]

Done

 

[Alex Alex Dawson oo! oo!]

What's it got to do with the NHS? It is NICE that have decided to remove the drug from the list. And, from what I can glean, that is in part down to the manufacturers, Bayer, not submitting evidence. I might be wrong but maybe your indignation should only be directed at the drug company.

This isn't true:
1) NICE has never considered this drug for either of it's licensed indications (Metastatic Bowel Cancer and Inoperable GIST) because Bayer (the marketing authorisation holder) has never submitted any data to NICE. That's Bayer's decision, there's nothing forcing them to do so, but the result is that the drug won't be used in the NHS.
2) The Cancer Drugs Fund (CDF) was set up by the current government in 2010 to facilitate the early provision of new cancer drugs in the NHS prior to NICE approval. As some who work in this field said at the time, creation the CDF may have been more to do with political expediency than modern healthcare provision. Essentially, it was designed to kick an emotive issue (cost benefit of cancer treatments) into the long grass whilst the NHS was being "re-organised", and then for the duration of this Parliament, by setting up an alternative funding stream. The CDF often duplicates work being undertaken by NICE and, as predicted, it has certainly undermined NICE in some cases; this being one. NHS funding for this drug has initially come from the CDF so why should Bayer bother going to NICE? So the haven't - simples eh? CDF seemed underfunded from the start and has overspent annually; unfortunately for patients/customers the top-down management approach from the DoH of just cut the spending now will mean some treatments being withdrawn at short notice. On looking at the CDF decision here it seems that they have concluded that the drug doesn't actually qualify for funding from them anyway - ie their original decision to approve was incorrect. Bayer clearly haven't supplied some published abstracts to which they've referred, which is poor, but I suspect that there may be some QOL (quality of life) issues; it's not really discussed in the decision document but the QOL score isn't great. The drug is a third line treatment for GIST after others, NICE approved but in the same class, have been ineffective or, more likely, the patient can't/won't tolerate the side effects. We're looking here at £14-15K for maybe 4 months additional life (vs placebo) with a questionable QOL over that period; the general NICE criteria is £30-40K max for a year with a decent QOL.
Fyi, I've had bowel cancer for nine years now and the drug treatments available to me now are being restricted by the CDF.

 

[Grapes of Wrath]

Done, just under 46K have signed so far. It took 2 minutes, I think we can all spare that to make a difference.

 

[Birdie Boy]

Done. 46,412

 

[drew]

This isn't true:
1) NICE has never considered this drug for either of it's licensed indications (Metastatic Bowel Cancer and Inoperable GIST) because Bayer (the marketing authorisation holder) has never submitted any data to NICE. That's Bayer's decision, there's nothing forcing them to do so, but the result is that the drug won't be used in the NHS.
2) The Cancer Drugs Fund (CDF) was set up by the current government in 2010 to facilitate the early provision of new cancer drugs in the NHS prior to NICE approval. As some who work in this field said at the time, creation the CDF may have been more to do with political expediency than modern healthcare provision. Essentially, it was designed to kick an emotive issue (cost benefit of cancer treatments) into the long grass whilst the NHS was being "re-organised", and then for the duration of this Parliament, by setting up an alternative funding stream. The CDF often duplicates work being undertaken by NICE and, as predicted, it has certainly undermined NICE in some cases; this being one. NHS funding for this drug has initially come from the CDF so why should Bayer bother going to NICE? So the haven't - simples eh? CDF seemed underfunded from the start and has overspent annually; unfortunately for patients/customers the top-down management approach from the DoH of just cut the spending now will mean some treatments being withdrawn at short notice. On looking at the CDF decision here it seems that they have concluded that the drug doesn't actually qualify for funding from them anyway - ie their original decision to approve was incorrect. Bayer clearly haven't supplied some published abstracts to which they've referred, which is poor, but I suspect that there may be some QOL (quality of life) issues; it's not really discussed in the decision document but the QOL score isn't great. The drug is a third line treatment for GIST after others, NICE approved but in the same class, have been ineffective or, more likely, the patient can't/won't tolerate the side effects. We're looking here at £14-15K for maybe 4 months additional life (vs placebo) with a questionable QOL over that period; the general NICE criteria is £30-40K max for a year with a decent QOL.
Fyi, I've had bowel cancer for nine years now and the drug treatments available to me now are being restricted by the CDF.

Firstly, thanks for clarifying that and of course best of luck with your own treatment. My mother had an incurable cancer but thanks to drugs the growth was kept in check and she had a further 8 years before she passed away.

With regard to your comments regarding Bayer, even though the drug has been funded by the CDF, surely it would be in a manufacturers interest to ensure that there is a continuous market for their product and, in this country, the NHS is the biggest customer. The CDF is a relatively new 'political' animal so surely the drug companies can see that as easily as it was set up it could be taken away (according to their own website the fund ends in March 2016), or in this case, funding withdrawn. It would seem to be in their economic interest to get a drug approved by NICE to open up a market with the NHS. However, as the benefits you refer to don't seem to meet the criteria for NICE approval then that is just another reason why Bayer won't bother supplying the info!

The CDF also monitor the effects of the drugs they are paying for, so I'm not entirely clear what they do that NICE don't, other than allow new drugs before they have gone through the NICE process. Does the CDF have a criteria for continuing funding drugs once enough data is available and how much does it differ from NICE?

I certainly don't envy those that have to make decisions about funding these types of drugs let alone be someone that needs them!

 

[rouseytastic]

Really sad this. He is my other halfs mate and a top bloke.

 

[Mayfair Seagull]

Done

 

[DumLum]

The Argus are reporting it needs another 20,000 signitures by the 30th this morning.

 

[telrald]

100000 signatures, thank you so much everyone for all your help, genuinely appreciated

 

[Peter Ward]

done and passed on to wide circle.