List of the drugs dropped from the Cancer Drug Fund.

[belinda]

It seems, to me, Amalfi, that we are sadly unwittingly playing a part in the current politics of the UK. Not right at all.

[Amalfi]

No drug fund in Scotland either. I don't even know if they consider individual cases.

[Bevlaar]

Thanks very much belinda! Yes i can definitely get around a fair bit easier now.
The Labour govt in Wales have stated categorically that there will be no CDF in Wales. There was a petition signed by 98,000 people recently which was taken to the Assembly building in Cardiff by a large group of cancer patients to present it to the Welsh Health minister....and he didnt even come out to receive it....he sent a spokesman.
I wrote to the Minister myself to put forward my case and stress the importance of us having access to the same drugs that are available in England and even had a personalised reply. But frankly....it was a load of drivel! Waste of time.
But thanks for being so supportive. ..its bizarre to think we all have the same disease but the govt treat us so differently.
Maybe one day......
Love bev xxxxx

[belinda]

Hi Bev, great news about your breathing by the way! There were a couple of petitions for a CDF for Wales but they seem to have been closed. Do you know of any other petition? Don't suppose my English vote would count, would it? If it did, very happy to sign.
X

[Bevlaar]

Sadly no CDF for us in Wales and I've heard that in cases where patients oncologists have applied for funding via the Individual Patient Funding system, most of these are turned down too...so even less options for us poor mortals 😡
Seriously something has to change soon! xxx

[mrsblue]

Woohoo, that was quick!! 🙂 Many thanks BCC team (I've not checked the links yet).

[June_BCC]

Hi MrsBlue

All done.

Take care

June

[mrsblue]

Moderators, please could you make this a "sticky"?  maybe instead of the Christmas "party" thread?

[2catlady]

Just bumping so people see the petition and pass on xxx

[geordiex]

nearly 5000 have signed the petition so far x

[Amalfi]

Does anyone know what the situation is in Scotland with breast cancer drugs?

[mrsblue]

Signed!

Just a comment... with some petitions there is an optional "comments" box in which it's possible to put "I have secondary breast cancer" or "I've had one of the blacklisted drugs and it gave me an extra 6 months survival time with acceptable side effects" (or whatever) but I couldn't find a comments box on the petition page.

Oh well, the main thing is to get lots of signatures!!

[belinda]

Here is the link grumpy, thanks.
http://epetitions.direct.gov.uk/petitions/72199

[grumpy]

Where is this petition????

I will sign, and get lots of other people to sign up.

grumpy

[2catlady]

Yes,still here,I wish bcc could put the petition on a separate thread so everyone can see it. I've emailed everyone it's now in Oz and USA thanks to my family and friends.hopefully they can sign it xxxxxxx
Go girl power xxxxxhugs Helen xxx

[Stillhere]

Well said Helen! I am trying to be positive and think that the CDF will bow to pressure, c'mon girls, get your name on as many petitions as possible, write to your MPs, just do something!! This isn't the end of the story, I'm sure xx

[2catlady]

Still here,it's still upsetting me too.The only treatments I have is chemo being TN. It makes me angry that they think we are not worth the cost,not everyone has SEs and some cope better than others. I personally will put up with anything If I'm still here to see my son grow up and settled. Hugs,Helen x

[Stillhere]

I just feel that as many different treatments as possible that have been successful in trials should be available to us. After all, only a few work for each patient and luckily we are well monitored so can switch if one drug is not working. When the drug pool gets reduced, I can only think that this will affect our options and length of life. I'm still upset about the whole business, it's shameful. Grrrrr!!

[Glo]

But not everyone gets the SE. I have been on everolimus for 3 months and apart from a few mouth ulcers at the start have been free of SE. It is supposed to get good results (I've get to find out, but my tumour markers have already dropped) and hopefully I will get a good run on it.

[2catlady]

Well said mrs blue xxx

[mrsblue]

Hi MfromChessy, you raise an important point.

These newer drugs will have been through Phase I and II testing, maybe a Phase III trial too, before being put on the Cancer Drugs list.  But as you have found with everolimus, for some patients the side effects can be so severe as to outweigh the possible extension of survival time.

At the moment it seems impossible to predict which drugs will give side effects - or, more importantly, which ones will work for a particular patient!  I myself have had Faslodex (fulvestrant) on a clinical trial, SoFEA, it didn't work for me (liver and bone mets) and I think NICE turned down Faslodex some time ago.  I also had 7 cycles of eribulin (Halaven) in 2013, via the CDF, I'm grateful to have it... though am shocked at the cost, I am a NHS patient so I'm not made aware of these realities.

That said, I strongly believe that these anticancer treatments should NOT be denied to patients purely on the grounds of cost.

[MfromChessy]

I have just stopped Everolimus after horrendous side effects for 3 weeks. Quality of life is important & as NICE wouldn't approve this drug I'm not surprised it's been axed.

[rosie53]

Thank you for the info Ann
J x x

[Anna_BCC]

Hi Everyone - our policy team has asked us to post the below

We know that the removal of drugs from the Cancer Drugs Fund will be distressing news for many so we wanted to provide you with a bit more information and as much reassurance as we’re able.

The drugs that have been removed from the CDF list are:

• Eribulin (Halaven)
• Everolimus (Afinitor)
• Lapatinib (Tyverb)

However, it’s important that people know that anybody currently accessing the drugs will continue to be able to access them and will not be taken off them. The changes will come into effect on 12 March 2015 and up until that date patients are able to access these drugs via the CDF.

Three drugs will remain on the list. These are:

• Trastuzumab Emtansine (Kadcyla)
• Pertuzumab (Perjeta)
• Bevacizumab (Avastin)

However, despite the good news that there are drugs on the CDF that people with secondary breast cancer can access, the priority must now be to urgently find a sustainable solution that works.

The CDF was meant as an interim measure: to address the issue of access to cancer drugs while a fairer system for pricing drugs was established. But to date, this has not happened.

If you haven’t already seen it, our blog post explains the main facts about yesterday’s announcement.  We also have a press statement which has been used in a lot of the press over the last few days. The comment is available here.

We will continue to call for a more sustainable system, so that people are not denied access to vital treatment. Hearing from people who will be directly affected by these changes really helps us to do this, so please do email us at campaigns@breastcancercare.org.uk with any thoughts on how these changes may affect you.

Please do get in touch with us if you need more information and support.  As well as using these forums, you can also call us on 0808 800 6000.

Best wishes

Emma, The Policy and Campaigns team

[grumpy]

No, I don't think this forum does do the 'most-deserving' argument. This argument is used in the media, and we mustn't get drawn in - once we engage with the priority of treatment argument, we are missing the point that the NHS is not properly funded. After all, this is why the CDF was set up in the first place, and the politicians have not yet looked at the neccesity for that fund and how to take forward realistic cancer funding. That's where we come in, with all our campaigning activities. And yes I do know that many of us participate in such activities. For example I work with our local MP to improve access to cancer treatment in the rural area where I live.

Not for one minute do I agree with restrictions to this fund, quite the reverse - in my view  CDF expenditure should become the norm for ALL cancer patients.

Please don't think I was arguing for resticted use of drugs for ANY cancer patient - I am pleading for exactly the opposite.

And yes I have used the forum a lot during the last 5 years, and yes I do look at the secondaries thread because a close friend has secondaries in bones - I don't offer anything to that thread except my love and heartfelt sympathy because I feel it would be presumptuous to do otherwise.

Hope this puts the record straight, and assures all readers that I had no intention of upsetting anyone.

Grumpy

[belinda]

I don't detect any "we are most deserving" argument here grumpy. Anything but, we know there's no infinite pot of gold just for women with bc secondaries. I don't know if you yourself have secondaries, if you have had access to the Cancer Drug Fund yourself. I don't know if you read here often but many here do campaign, write to MP's as we are desperately trying to raise the profile of women with mets. Once diagnosed with secondaries the rest of the bc community are often too frightened to read about you, think about you. The support offered for women with primaries is often sadly lacking once you have further spread. We also only receive a tiny fraction of the monies raised from Pink October.

[grumpy]

While I agree with everyone else about the recent news - it is deeply shocking - we must beware of the 'we are the most deserving' argument. The crux of the issue is that the NHS is not properly funded, and as someone has said the people who make these decisions are often in private medical schemes.

As for 'migrants' please remember that those legally here will pay tax and national insurance - those here illegally get nowt because they don't actually legally exist.

The focus of our concern should be to tell politicians of ALL persuasions that the NHS must be funded and organised properly, and hold them to account when they renege on promises. After all if all these international  companies that trade here paid full taxes here the deficit would be wiped out with plenty of money to spare..

There are questions to be answered about drug company profits as well, they are purely commercial organisations who need to fund their work without terrible greed for profits.

And of course we must beware of ignorant nutters who haven't the guts to tell us personally what they think, and of course it would be very different if someone they know was affected..  have you met anyone who says they decline lung cancer treatment because they have been/ are a smoker????

Let us all write to our MPs, the PM, local and national newspapers, making one he'll of a stink.

Grumpy

[madge1]

Hi everyone,
I too feel upset and angry with the decision made by the CDF and the NHS. I worked within the NHS since I was 18yrs old and was medically retired last year at the age of 50 !!! I have seen much wastage, too many managers which were not needed and those from abroad using our health service and getting away with it !!!!! Drug company's are also to blame for extortionate prices of these drugs!!! They dangle us a life line then as quick as that they take it away!!!! We are all, more than likely told there are many lines of treatment and we all try and keep positive and hopeful !!!! I feel I'm half way along mine, and that's not like me, I'm usually positive and put on a brave face, but now I'm low and think what's it all for !!! Sorry for rambling on!!!!
Xxx

[belinda]

Yes it was this doctor bill-ben, writing in the British Medical Journal last week, a very controversial view!
http://blogs.bmj.com/bmj/2014/12/31/richard-smith-dying-of-cancer-is-the-best-death/

[rosie53]

Bill-ben, i totally agree with you, our government need to start "looking after their own" and stop letting any old Tom, **bleep** or Harry coming to our country to abuse the system....that goes for NHS and DWP!! Soft told Britain thats us!!! gggrrrr
J x x x

[bill-ben]

There was a person on the radio the other day my husband was listening to (not sure if he was a MP or NHS) who stated people in our position should be given morphine and a bottle of whisky and thats it. My view is the NHS should stop treating all the people who come from abroad just to use the NHS.All the people who move to this country and use the NHS having never contributed a penny should be made to pay. There might then be money to pay for drugs for the likes of us who have paid all our lives. Another rant over.

[belinda]

There is a response from BCC, here,
http://www.breastcancercare.org.uk/news/blog/eight-things-you-should-know-about-today-s-cancer-drugs...

[Nanofthree]

I have spent all day worrying about this and have already sent two emails to the office of the PM. Not that it will make an iota of difference but it makes me feel better. I have realised,that apart from our friends and families nobody really gives a damn about us. Does anyone have any ideas a out how we can fight this rather than just take it lying down? Our extended,lives are at stake here and we shouldnt just sit back and take it. I am up for a fight! Love Ruth xx

[2catlady]

My god Belinda ,it just gets worse. I've always looked after myself. I've just inherited dodgy genes . I would not wish this disease on anybody but the people that are writing selfish comments about us ......
Why waste money on boob jobs,gastric bands for fat lazy people,junkies and alcoholics ,but the NHS does .god I'm so upset and it's just all making me want to cry all the time. I always try to be a positive person but this .....:(

[belinda]

Glad I missed the radio phone in. With online comments I don't know if it's people feeling brave, anonymous behind the keyboard and screen but there does seem to be a general opinion of "well you should have looked after yourself better," and "why waste money on those who can't be cured" attitude out there. Disappointing, suppose the people who do comment online are either bored at work or they just like upsetting others.

[Porkie]

Hi ladies, I echo all your thoughts. Was listening to Radio 2 earlier and made me so angry where people were saying that they agreed with the drugs being dropped and people should borrow the money to fund their treatment. Like many of the ladies on the site I am very unlikely to be here in 8 years to collect my pension and having paid in for 40 years feel very agrieved that when I need help it is not going to be forthcoming. It will definetely make me think when it comes to voting in forthcoming election. Rant over just very sad now.x

[rosie53]

Hi ladies, just got home from work and am still seething and sooo upset re: drug funding 😞
As some of you have said if it was their mum, daughter,wife etc would they still want to cut to it??? I have spent most of the morning with this banging round my head and thinking omg i will have to re-mortgage my house to fund my treatment in the future!! when really i should using my time and energy trying to keep sane and "healthy" whilst fighting this disease...ggrrr
hugs J x x

[Stillhere]

Feeling upset too and very angry!! I worked for 6 years in a hospital that did gastric banding, gender reassignment, treated many patients not entitled to NHS care- bringing in interpreters at vast expense etc etc. Now we are told that we're not worth it!! Ggggrrrrr! If David Cameron thinks that this announcement will damage his chances at the next election then surely some more money will be found??

[EJ81]

Had a chat with one of the oncologists at my hospital this morning and she thinks BC has got off lightly! Still not pleased though. Apparently re my earlier comment I had misunderstood - avastin is not being stopped for BC patients only for bowel cancer which is why it has been reported this way. LD I totally agree, reading some of the comments with the reports makes me sad and angry. If we are just ignored and not treated then they will never find a cure!!

[busyanne]

Ladies, like you I think this is shocking.  I also agree that if the powers to be were in the position of having metastatic cancer or their family members they would change their mind.  Of course the people who make these decision usually have enough money to purchase the drugs privately.  It really infuriates me that we as tax payers contribute towards research, we then are approached by charities to support research which the general public do to only be denied the benefits of the research because of expensive drugs.  No one ever said that health care would be cheap. We do need to get to grips with cost but the politicians etc should be looking at waste, for examle an over prescribed management tier, hugh salaries, waste in materials which are not even accounted for. 

I do not live in England but believe me we are in a worse situation as we do not get half the drugs that are available to people in England.  I do not believe in a post code lottery regarding service provision.  I am constantly writing to the Scottish Parliament but get little or  no response.  I have tried to get my MP in London to raise my concerns in Westminster but again he cannot as he is not sitting in the chamber when health is being discussed. 

I am starting to think that politicans are not really interested in maintaining a strong NHS they are only interested in using the NHS as a bargaining tool for elections.

Sorry for the rant but I am really disgusted with the medics and politicans who make these decisions.  From what I have read other European countries have greater access to the drugs we are denied and yet we contribute as our European neighbours do to research.

Anne

[2catlady]

Yes,LD,I agree with you. I wonder if it was their mum,daughter,wife...
The saying walk a mile in my shoes springs to mind.
I haven't read any comments as just too upset about it 😞

[LemonDrizzle]

It's very sad and very worrying for all of us. I've been upset reading comments in response to the newspaper articles from so many people who think these drugs are a waste of money and we shouldn't be given them. I'm sure their opinions would change instantly if they or a loved one were given this diagnosis.
LD x

[2catlady]

Yes,it's just another knock for SBC . We seem to not be worth saving 😞 xx

[belinda]

Yes I can understand the being knocked for six feeling Helen. I used to get angry about these things but feel quite powerless now. X

[2catlady]

How can you put a price on someone's life. I'll not get my old age pension that I've paid all my working life im48. I'm just soooo angry and scared there won't be drugs to keep me going. Why don't the drug companies drop the price as it is such a waste of money all the research if no one buys them! The nurses on onc ward keep saying new drugs are coming out all the time,well fat lot of good that is as they'll be too expensive for NHS to use.
I'm very upset and scared now ,it's really knocked me for six this news.xx

[belinda]

The Cancer Drug Fund is now just another tier of NICE isn't it? I used to naïvely think new drugs would come along and become the gold standard asap.

[Glo]

They talk about value for money, but I'm not sure that some of these drugs have been around long enough to show their true effect eg everolimus, I may be wrong and am happy to be corrected! I know someone posted on here that they had been on everolimus for 2 years, sufferers in the future will be denied that opportunity!
Personally I have cost the NHS very little up until now (everolimus at £3000/a month!) and get quite angry at all the self inflicted, avoidable conditions that cost the NHS millions!
Win, win for the government, safe the cost of the drugs, we pop our clogs sooner, the also save our pensions! I'm 61, and my pension date has moved twice, now I'll get it (if I live longer enough) in Nov '16. I should be ble o bequeath it to paying for someone's cancer drugs!!!!!
What's the point of all the fund raising or research if NICE, NHS refuse to licence the drugs. They have already refused about 10 BC drugs. I read about another one in US that shows very good results, shortly to approved, which we will never get!!!
It's totally unfair!!!!!!

[belinda]

I just don't understand it. The NHS readily pays for some things which, to me, come under lifestyle choices rather than health.

[2catlady]

Very scared too.i cried last night at the thought of drugs being taken away from us. Being TN I don't have many options to begin with.
Yes,if your fat,a druggie or an alcoholic they throw money at you. So unfair