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NICE Denies Us Another Drug...

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Re: NICE Denies Us Another Drug...

Ponsmuir (Susan), thank you for the information about CK in Germany. It was very kind of you to think of me. Sadly S2 is not the same as the old E112. If it was we would all be getting our doctors to refer us to Germany, to avoid the need for complicated funding applications.
E112 (which was replaced by the EHIC card), merely entitles the card holder to treatment in another European County which is needed to allow them to continue their stay until their planned return to the UK.
To be eligible for planned CK treatment in Germany my Oncologist would first have to make a funding application in the UK. If successful the funding body ( NHS England since the 1st april 2013), would then issue an S2 form which would entitle me to treatment in Germany. So I'm afraid, opting for treatment in Germany wouldn't avoid the complicated funding appliction. In fact, as Germans are required to contribute 25% of the cost of their treatment, I would have to stump up around ten thousand euros, which I would then have to claim back upon return to the UK (so even more complications).
For those interested in getting funding for treatment abroad I am posting a link below:
http://www.nhs.uk/NHSEngland/Healthcareabroad/plannedtreatment/Pages/TheE112.aspx

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Re: NICE Denies Us Another Drug...

3network3 Thanks for the reply. I did think that was probably the situation. So much for reciprocity.
I get the feeling that Britain is being made the mug of Europe. It seems we have to provide free healthcare to anyone who manages to get an address /stay for three months - whereas other countries do not do this. I appreciate that we benefit from the European staff that work in the NHS, but providing a free international health service must be costing us a fortune. No wonder Germany can provide such a wonderful health service.

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Re: NICE Denies Us Another Drug...

Thumbie, I agree that's a slippery slope. After all, how often do we hear that 40% of cancers (or however many it is in any given report), are due to lifestyle factors. So then what? Only treat cancer patients with a healthy BMI, who've never smoked, taken the pill or HRT, etc. etc. The blame game is not helpful for any of us.

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Re: NICE Denies Us Another Drug...

Sadly Lemongrove you and I (I'm a German national) can't just go to Germany and get free treatment. It's not free for residents in Germany either. You need to have a health insurance, in order to be health insured in Germany you have to live there. It is compulsory to be health insured unlike America. If someone is on benefits the German state pays for your health insurance.

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Re: NICE Denies Us Another Drug...

Do you think people with addictions or obesity should be punished by not being treated for their health problems? Haven't they paid their national insurance? I can only think it would spread more grief around.

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Glo
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Re: NICE Denies Us Another Drug...

I get really cross about all this.
So many people with self inflicted health issues (due to smoking,drugs, obesity) get all the treatments they need and we..., well!!
Also what about all the funding raising to help research. The research and drug development is happening, much of it funded by charities, yet the patients are being denied the treatments!!
What can we do??

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Re: NICE Denies Us Another Drug...

Dear Lemongrove,
I've been looking into Cyberknife in Germany and have found this centre in the North. It looks pretty modern and on the ball. It also says it accepts EU citizens with S2 (former E112) funding.
Whether they have restrictions on the number of mets you have, I don't know. From my experience, medical care in Germany is excellent.
http://mhlclinics.com/cyberknife_north_germany_patients.html
Susan x





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Re: NICE Denies Us Another Drug...

3network3, I think our National Insurance contribution works out at around 12% (though it's so confusing, I may very well be wrong!!!), so not that much difference between the U.K. and Germany.

Having spoken to various friends who work in the NHS, including an Asst. Director of Finance, I really think the problem is misdirection of funds with literally millions upon millions of pounds being wasted on private consulting companies which turn in report after report and tender after tender, with no decisions ever being made; money which should be spent on patient care being poured into a black hole of administrative nonsense. That is the real tragedy of the NHS, which is being dismantled and starved of cash before our very eyes, so that it can be privatised... Large chunks of it already have been and our services and treatments are all the worse for it.

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Re: NICE Denies Us Another Drug...

I don't think that's the case if you're resident in another European country is it? European tourists are only entitled to emergency medical care in the rest of Europe AND in the U.K. Citizens of the rest of the world are not entitled to any free treatment here. It's just that the NHS doesn't have the resources or systems in place to go after payment and there is reason to believe that it would actually cost more to recover that money than any amount the NHS would earn. Attention-grabbing tabloid headlines and Tory propaganda which aren't supported by the facts. Again...

I'm afraid I don't think you can leave politics aside on this issue...

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Re: NICE Denies Us Another Drug...

Sadly Lemongrove we are only entitled to emergancy medical treatment. Unlike if any of nour global friends come here....but that's another story!

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Re: NICE Denies Us Another Drug...

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

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Re: NICE Denies Us Another Drug...

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

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Re: NICE Denies Us Another Drug...

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.

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Re: NICE Denies Us Another Drug...

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!

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Re: NICE Denies Us Another Drug...

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?
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Re: NICE Denies Us Another Drug...

All that cancer charities seem to do is voice their dismay. What about some action?

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Re: NICE Denies Us Another Drug...

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????

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Re: NICE Denies Us Another Drug...

The Scottish Medicines Consortium haven't approved it either.

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Re: NICE Denies Us Another Drug...

Bumping this up again. And I'm sorry to hear how much you are having to pay for your treatment horsie.
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Re: NICE Denies Us Another Drug...

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??

Member

Re: NICE Denies Us Another Drug...

Bertie the funding changes at the end of this year - there is a lot of uncertainty about what will replace it: http://www.bbc.co.uk/news/health-21030986

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Re: NICE Denies Us Another Drug...

Absolutely Shocking!!!!
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Re: NICE Denies Us Another Drug...

The broken link to breakthrough.org should work here -
http://www.breakthrough.org.uk/news/all-news/nice-afinitor-decision-breakthrough-responds
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Re: NICE Denies Us Another Drug...

Hi..haven't got secondaries but I think this is DISGUSTING!!!..anything I can do to help??..

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Re: NICE Denies Us Another Drug...

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

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Re: NICE Denies Us Another Drug...

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

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Re: NICE Denies Us Another Drug...

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?
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Re: NICE Denies Us Another Drug...

Bump

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NICE Denies Us Another Drug...

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:

http://www.breastcancercare.org.uk/news/blog/our-comment-nices-decision-not-recommend-afinitor-everolimus-be-available-patients-nhs?utm_source=Media_centre&utm_medium=press_releases&utm_campaign=Our%20comment%20on%20NICE's%20decision%20not%20to%20recommend%20Afinitor%20(everolimus)%20to%20be%20available%20to%20patients%20on%20NHS