I’m sure many of you will already have heard that NICE has not recommended Everolimus / Afinitor to become standard tx for those who might benefit from it. Another kick in the teeth for those with secondaries and maybe time for another Herceptin-style fight…
The following link is to Breakthrough BC’s response to the announcement:
http://www.breakthrough.org.uk/news/all-news/nice-afinitor-decision-brea…
And this is BCC’s response:
Bump
Hi Angelfalls, sorry I couldn’t get the first link to work. I read this disappointing, to say the very least, news yesterday. The newspaper article I read said it would still be available through the cancer fund. But the fund must surely have an end date? And where does that leave all those with secondaries living outside of England? I think the fund only covers England?
Morning All! Thanks for the info Angelfalls, yes another blow to us Secondariy girlies. The Cancer Drug fund does end very soon Belinda. The Cancer Drug Fund is also not avaliable to us Welsh girls. So, for my Eribulin we have to fund it ourselves at 3,000 per 3 weeks!!!
It is shocking that these pharmaceutical companies dpend millions developing drugs/therapies to help us live longer, for the UK patients to be denied it…
Rant over, eldest daughter has boyfriend coming around to chill in garden so have to dash off to a pals for a cuppa, don’t want to be around those two! Hugs to you all! laura xxx
More shocking news for all us secondary ladies, nothing nice about NICE. There are quite a few ladies on this treatment and so far working well so that’s another option taken away from us. Feel very angry this, I read recently that the Cancer Drug Fund is coming to an end soon but I don’t know the date.
Marina x
Hi…haven’t got secondaries but I think this is DISGUSTING!!!..anything I can do to help??..
The broken link to breakthrough.org should work here -
http://www.breakthrough.org.uk/news/all-news/nice-afinitor-decision-breakthrough-responds
Absolutely Shocking!!!
Bertie the funding changes at the end of this year - there is a lot of uncertainty about what will replace it: Cancer drug fund future 'uncertain' as new scheme 'ill-defined' - BBC News
Thanks for posting the fixed link to Breakthrough’s response, jenanne.
I know nothing at all about law, but I do wonder if there’s a Human Rights case to answer here, given that this has been approved in Europe but not here, so putting us at a considerable disadvantage compared to our European cousins… Anyone have any idea??
Bumping this up again. And I’m sorry to hear how much you are having to pay for your treatment horsie.
The Scottish Medicines Consortium haven’t approved it either.
Morning All. Luckily my husband’s company medical insurance covers the cost. But if they didn’t we would just have to mortgage the house. This would be a huge shame as at 48 yrs old we have just paid off our mortgage (which was the size of the Chilean national debt) and as I have secondaries we are frantically paying off everything that we owe so when the worst happens Mike can give up work to look after the children and he has few outgoings.
It is shocking that the rest of the globe have access to these drugs, but then they are paying for them and all of their treatment via private health insurance.
How awful will you feel if you can’t afford to have these drugs when they are your only hope for an extended life? terrible…Angelfalls brings up a good question about our human rights. Does anyone know a human rights lawayers???
All that cancer charities seem to do is voice their dismay. What about some action?
Same situation in Scotland SMC have also declined approval. Surely this is a case where we should have equality with our European cousins? There must be a lawyer out there who would advise charities on fighting for this or are they all just happy to shake their heads and say how disappointing it is? I for one am fed up hearing about European law and the human rights of criminals. Do we not all have a right to life?
Laura (Horsie), Don’t forget we all pay National Insurance (The clue’s in the name!) for our welfare system, including health care, and our contributions were increased only recently. It’s just a question of where on earth all that money goes… And actually, not all countries’ healthcare is paid for 100% by private health insurance. In fact I believe that there are a number of European countries where this is not the case (France, Spain, Germany,…).
Weepixie, My point exactly!
In Germany we pay 14% of our wage for a health insurance, this is compulsury! I sometimes feel like packing my bags and leave great british behind me, but married to a Scotsman that doesn’t speak German makes it difficult beside other things. Germany has doubled more radiotherapy machines per 1 mio citizens than Britain (Germany has seven cyber knifes too) and hospital bed availability is 8. something per 1000 people, in Britain it is 3 per 1000. I am thankful for the treatment that was given me for my primary but it is sometimes worrying.
Angelfalls, I totally agree with you, we pay National Insurance for years and years-sadly these contibutions just isn’t enough to keep that huge wheel called the NHS going. But, politics aside it just isn’t fair that a person can get breast enhancement surgery because she doesn’t feel like a woman, yet life saving drugs denied us. There must be so many of us out there, not just with cancer but other life limiting conditions… Hope you all have a great day and enjoy the sunshine…xxxx
3network3, two questions: As Germany belongs to the European Union, am I right in assuming that while you’re in the UK, the NHS provides your care free of charge? If so, Britain is also part of the European Union, so would I be eligible for all the wonderful treatment you describe free of charge if I went to Germany? If so I’m on my way because I could do with some free Cyberknife treatment at the moment 
Sadly Lemongrove we are only entitled to emergancy medical treatment. Unlike if any of nour global friends come here…but that’s another story!