Abraxane - Wales

[cbrooks]

Hi everyone, just posting to say that I think the all wales strategy board who decide if abraxane will be available on the NHS in Wales had a meeting yesterday, hopefully we will find out the outcome soon, cant find anything online this morning. I am waiting to see my dads consultant oncologist on Monday to discuss the outcome of his IPFR referral for abraxane, and im really hoping that we will have a 'Yes', or that it has been passed by the strategy board. My dad was unable to have folfirinox as he has a mitral heart valve replacement so started on Gemcitabine 2 weeks ago, but was unable to have it last week as to elevated Lfts..... fingers crossed we can go ahead with todays treatment. Will keep you all posted as to outcome with Abraxane. So hope it is approved for use in Wales.

[Slewis7313]

Thanks for the information Catherine which I will follow until we have a decision. Has this review come as a spin-off from the Cancer Drugs Fund decision or have the Manufacturers sought approval from all authorities at the same time?

Steve

X

[cbrooks]

Hi everyone, I was wrong in thinking that the All Wales Strategy Group were deciding if abraxane was going to be available on nhs in Wales last week, there was a meeting but not about this, must have got my wires crossed. We saw the oncologist today who told us that my dads independent patient funding referral had been unsuccessful. They will not grant him funding for Abraxane on compassionate grounds. I am so annoyed, Especially as it is available on the NHS in England now. I want to appeal, although don't know the process, will have to find out details. I was told the reason for turning him down was that it only gives 1.8 / 2 months extra life expectancy........(as I knew from the trials) but I have also read so many other positive outcomes of tumours shrinking and being stable for a lot longer than this time with the combination of both drugs. If anyone can offer me any advice of how to word my appeal much appreciated. I know the press will probably be interested in a story like this at the moment as Abraxane has had lots of mentions in the Dailys and the Wales/England thing will be of interest.

Steve - I have finally managed to get my parents up to Maggies today, It really is a fantastic place, we saw Lucy and she told us that you were involved in setting up a pancreatic support group there which sounds great. She also said for us to arrange a meet with you and your wife there when you have time. I am away from this Thursday for 2 weeks but hopefully we can sort something out for after then, Lucy said it would be great for us to all meet up and said that I would get on with your daughters! It only took me 5 months to get them into there!

Hope everyone else is coping with their journeys....what a complete and utter Rollercoaster.

xx

[Slewis7313]

Hi Catherine, the decision from your Oncologist must be really be frustrating when they quote the reason as only 2 months increase in life expectency, when this is the very criteria which the Cancer Drugs Fund used to approve!!? I believe we pay the same NI contributions in Wales as in England, so we should be treated similarly.

Glad you had a useful visit to Maggies and met the entertaining Lucy. We are more than happy to meet up at your convenience as we live only 5 minutes form the Hospital. It is really exciting news that things are moving forward with the support group after Debbie visiting from PCUK last week.

Take care for now and hopefully see you soon.

Steve

X

[J_T]

Sorry to hear your news Catherine. Two months is a long time for pc patients, don't they realise that?

yet?

As Steve says that was the criteria used by CDF!

Hope you get a meet up organised soon.

Julia x

[Slewis7313]

The information and decision given to Catherine's Dad irritated me somewhat, so I emailed the 'All Wales Medicines Strategy Group' this morning with a simple question asking what their stance was on Abraxane with regards to Pancreatic Cancer patients in Wales. Much to my surprise, they responded in detail within an hour. They have asked me to fill out a questionnaire to assist with their assessment, which is currently only at the 'submission received' position in the process....... No decision has yet been made! This would imply that the decision given to Catherine was made locally???

The questionnaire is open to patients and carers living in Wales and can be found at:

http://www.awmsg.org/awmsgonline/docs/awmsg/appraisaldocs/inforandforms/Patient%20Carer%20Patient%20Organisation%20questionnaire.doc

Progress of the application through the system can be found at:

http://www.awmsg.org/awmsgonline/app/appraisalinfo/1999

[AWTTC ref: 1999]

Hope this is of help to those of you living west of Offa's Dyke!

Steve

X

[Guest]

Just wanted to say, how good it is of Steve to do this, think it is really good of him.

X

[cbrooks]

Steve - you are a trooper, thankyou so much, will complete the questionaires and submit them, and will contact the oncol's secretary later to ask exactly who I contact/appeal to about the refusal, I think the letter came from Port Talbot, so it must have been ABM. If I cant do it before I go away will have to get straight on it when I get back. Very interesting to find out that in Wales it is only as submission stage...anything we can do to hurry it along its way is fantastic. Im impressed with the speed of service of the answer you got back though. Thanks again. look forward to meeting you when I get back from hols x

[Slewis7313]

They were extremely helpful and responded very quickly. We exchanged a few more emails as I queried the length of time the process takes, which unfortunately averages 20-22 weeks plus however long the Ministers take to approve the funding which is around an additional 2 weeks. I really do hope they take the lead from the CDF as setting a precedent and that they follow suit, but who knows.

Good luck with the appeal Catherine as the CDF decision must surely carry some weight!

Steve

X

[Slewis7313]

The 'All Wales Medicines Group' (New Medicines Group) are looking at Abraxane from 23 July, for review at their meeting on 3rd September.

Things are moving, hopefully in the right direction.

Steve

X

[Slewis7313]

The link below is from a local rag in Cardiff (Western Mail). They seem to have drawn on various informed sources to get the message home and hopefully influence the final decision on 4th September.

Fingers well and truly crossed!

http://www.walesonline.co.uk/news/local-news/could-pancreatic-cancer-sufferers-wales-7666831

Steve

X

[Bowie]

Steve, what a beautiful family.

Fiona X

[EmmaR]

Steve The Super Star ! Looking good and Margaret and your lovely daughters let's hope someone from the all Wales Medicine Group were looking in and will sit up and take notice .

Wishing all the best and a lovely relax in Jersey

Emma x

[sandraW]

Steve, gorgeous wife and 2 gorgeous daughters, no wonder you are smiling so broadly, hopefully people will take note and do something sandrax

[Slewis7313]

A result! The All Wales Medicines Strategy Group announced their decision today. They had already indicated it would probably be authorised for first line treatments only for patients with metestatcic (secondary) cancer and a performance score of 70-80. This was a step in the right direction, but today's announcement has confirmed they have removed the performance score criteria which will make it available to a wider group of people than initially indicated.

Not a perfect result, but they have given some leaway, which for that to have happened means they have been listening to us and understand our situation enough to reconsider the original plan.

A good day for Pancreatic Cancer sufferers as far as available tools in the armoury are concerned.

We'll grind them all down little by little!

Steve

X

[Bowie]

Steve, fantastic news and you have done your bit. I showed James your TV appearance and he thinks you're awesome as our grandson would say. You, along with others on this site definitely give us hope in our darkest moments. Fiona X