Moderators, please could you make this a "sticky"? maybe instead of the Christmas "party" thread?
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!!
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.
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.
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:
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:
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 firstname.lastname@example.org 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.
Emma, The Policy and Campaigns team
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.
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.
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
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.