Cancer drug fund to re-evaluate access to 42 drugs in December!!!

[mrsblue]

I do wonder - tho probably I shouldn't - whether NICE has ever rejected an antidiabetic drug.  (Anyone know how I could find out?) I suspect that cancer drugs are more expensive than those for diabetes

PS I had 7 cycles of eribulin in 2013.

[nicky08]

This amendment was sneakily added when the CDF had additional funds added earlier this year, it made the government look good that more funds were available but they did say all drugs in the fund would be looked at for their cost vs effectiveness. As someone has said, just like all NICE approved drugs then! It's also very worrying for those of us who may need the next stage of drugs such as Kadcyla, which is on the list, when/if their current HER2 treatment fails. It's all very well them saying if you are on the treatment already it won't be withdrawn for you but what about the 'next' drug as that's what we all look at and hope there is something else to treat us. Some understanding needs to be achieved between the drugs companies who do spend many millions on developing these drugs, for which I am so grateful for, to what the cost must be to allow the NHS to prescribe them routinely. The NHS is the biggest organisation in the world so surely their biggest customer? What would be the point of them continuing to develop the drugs we all need if you can't sell them afterwards and recoup your costs? But also does the NHS actually look at the possible numbers of patients who may need these drugs rather than the cost per course of drugs? If say only 1000 people need Kadcyla the cost overall is restricted but how many patients overall are on statins, 100,000 or more? Just hope common sense prevails.
Nicky

[Bevlaar]

Agreed Belinda. Let's hope the powers that be get their act together on this one and get the wheels in motion asap. Time is of the essence xxxx

[belinda]

Thank you Anna, hope there is enough noise so those who need to sort this out sit up and listen. We patients don't have the luxury of time to wait for their procrastinations.

[Anna_BCC]

Diana Jupp, Director of Services and Campaigns at Breast Cancer Care, said: "It's incredibly worrying for anyone affected by secondary breast cancer, which cannot be cured, that so many breast cancer medicines are up for evaluation within the Cancer Drugs Fund. We know this is an issue of enormous anxiety, on top of the already huge emotional burden of living with cancer.

"Access to best treatment and care for people with secondary breast cancer urgently needs addressing. It's critical that the National Institute for Health and Care Excellence (NICE), NHS England and the pharmaceutical industry work together to find an efficient new system that ensures all patients across the UK can benefit from new approved treatments."

http://www.breastcancercare.org.uk/news/blog/cancer-drugs-fund-re-evaluation-incredibly-worrying-our...

Best wishes

Anna

[belinda]

Morning and thank you June. X

[June_BCC]

hi Belinda

I have referred your post to the appropriate department for them to have a look at.

Best wishes

June, moderator

[bertie1]

I agree it is as if us cancer patients are not worth these life saving drugs,but obese people who mostly bring it on themselves are entitled to gastric bands on the nhs and people have boob jobs as well.At the end of the day we didn't ask for this disease it just happened to us so we have every right to have these drugs ,after all we have paid into the system.
Kaye xx

[belinda]

Just to add, as know some here are already on some of these treatments, the BBC report does state that no-one already on any of the listed drugs will be taken off them. X

[belinda]

Morning everyone, here's the list of drugs with another list which are going to be evaluated after this. Eribulin is in the second list.
http://www.england.nhs.uk/ourwork/pe/cdf/drugs-assess/
I realise the NHS usually pays top dollar and then some for drugs but how come? They must be the best customer of the drugs companies or one of the best? If the CDF is now considering cost effectiveness surely it's just become an offshoot of NICE.
I'm sure you will be asked your thoughts on this BCC, would you mind posting a link here when you have made a statement, press release? Apologies if there is already one on the BCC site I have missed.

[2catlady]

Ah sue,thank you xxxx I'll not give you angry eyes lol xxxx
Yes,I agree it does make cancer patients feel as we aren't worth it,grrrrr to NICE and bean counters for CDF . I'm putting angry eyes on for them.
Stay strong ladies,hopefully the more we shout someone will hear us,Helen xxxxxx

[pumpkinsue]

Dear Helen,

                       I also meant to say what a brilliant sense of humour you have and how supportive you are of everyone on here.  I especially liked the 'angry eyes'.

Sue XXXX

[pumpkinsue]

Dear Belinda,

                          Thank you for your post. You are completely right I thought the point of the CDF was to provide drugs which NICE have turned down.  Thank you also for posting the BBC link!  I wish I had the technical capability to do so!!  You are a true inspiration for everyone recently diagnosed!!

Dear Helen,

                     You are right too about all the boob jobs, gastric bands and other such operations.  I don't begrudge people these but like you say people with cancer are always made to feel guilty about the cost of drugs which seems in my mind to imply that somehow our lives aren't worth as much!

Dear Bevlaar, 

                         It is bad enough Welsh and Scottish people don't have access to the CDF.  Having seen articles about this and how some people have had to move to access drugs.  I did think to myself I wonder how much longer English people would be able to access these drugs. Well I think the answer is literally blowing in the wind.  I wish you all the best too!

Again best wishes to you all!

Sue XXXXXX

[belinda]

Hope this is ok with you Sue but here's a link about this from the BBC site,
http://www.bbc.co.uk/news/health-30022025

[2catlady]

I'm speechless ,they're putting gastric bands and boob jobs on NHS and taking drugs from us. Again people with any kind of cancer are not worth saving to the bean counters. Grrrrrrr

[belinda]

I feel really angry about this. Not so long ago I read not enough patients were being referred for the CDF.
I thought the whole point of this was to use funds to access drugs that were not easily available through the usual channels probably due to NICE thinking of cost effectiveness. If they are applying cost effectiveness to the CDF now what is the !?**!! point?

[Bevlaar]

Its bad enough that we cant get a lot of these drugs in Wales as it is with no CDF! Reduce our accessibility to these drugs a bit more...thats really putting the final nail in our coffins!

[geordiex]

urgh great thats all we need x

[pumpkinsue]

Dear everyone, 

                            I have just noticed on BBC text that on December the 15th and 16th the CDF is going to review access to 42 drugs.  These include the breast cancer drugs eribulin, lapatinib, pertuzumab, TDM1, avastin and afinitor.  I don't know if anyone else feels like I do about this  but the fact they are discussing 'cost effectiveness' for these drugs in my mind and forgive the melodrama is signing my death warrant.  We know what happens when they review the 'cost effectiveness' of drugs it is just going to be a prelude to withdrawing them.  I am currently on herceptin and peruzumab funded through the CDF.  My consultant has in the past tried to reassure me that if there is progression I could move onto xeloda and lapatinib.  I can probably kiss goodbye to that.  What about the peruzumab?  Will that be taken away??   I just wonder if anyone else is worried.  You like to think that treatments have improved so much in past years but it doesn't look like ordinary people will be allowed access to them!!

I wish you all the very best especially Dawn!! I hope TDM1 does the trick.  You are such an inspiration!

PumpkinSue