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FAD APPEAL

Hi Sandy

Im sure we are all wondering how the appeal went and what happens now?

Do they have to start deliberating again and what is the likely time scale.

Steven D

 

Dear Steven,

We have applied to NICE appeals committee by letter setting out our grounds for appealing the FAD. We will have to wait until they consider it and then accept us (or not) at 'appellants'. If they do we will be required to attend the hearing and give evidence before a barrister. 

I will let you know when we hear that we can appeal or not.

best wishes,

Sandy

I have good news. Our letter of appeal against the FAD has been accepted. We will attend the hearing on 4th November. This is an all day affair and will be held in Manchester.

We are proud of this achievement as it is very rare that grounds for appeal are accepted.

Best...

Sandy

 

Well done Sandy and David, we do so appreciate all of your efforts and you really do deserve this success. Onward & Upward!
Irene.

Really, really well done Sandy! Not only is this taking a great deal of your time and energy, but it must also be taking a financial toll? Is there anything we can do to help? Pass the hat?!!

xx

Hi Vickie, thanks and yes you are right, this work does have an extra cost on top of the core work that we have always done. It has not been easy this last year, and to apeal a FAD is very technical and requires many hours of research and careful crafting of words etc.......I have David (my partner) to thank for that. 

 

The ABPI (Association of British Pharmaceutical Industry- a sort of union) has recently changed their rules  of engagement when their members support patient groups, which means that the educational grants that we received over the years have more or less dried up in that form. We now have to jump through a lot more hoops and that in itself is time consuming.

 

The previous form of grant were of the 'no strings attached' type (which is of course exactly what we want) and this was why we never had to ask for financial support from the general public and more importantly from patients and their families who use this site as a resource.

 

We are working on othe ideas to supplement our income so we can keep going and growing over the coming years.

 

Also- and I am just as guilty as anyone for not being consistent in my online shopping as I should be- our 'donate for free' link to easyfundraising.co.uk really does work- and would raise a lot more if we could all get in to the habit of using it.

 

For instance, we have just ordered CMLSg's office printer ink through easyfundraising.co.uk/cmlsg - 'Ink Factory'  are cheaper than the high streeet and the bonus is that they give 12.5% of the total order to CMLsupportgroup- as long as you remember to specify us as the charity you want to donate to. So you set up an account as an individual and then specify CMLSg as your charity.

The trick is to remember to log on to easyfundraising site BEFORE shopping.

 

Other than that, hats of any size are very welcome...;o)

Best wishes,

Sandy

Hi Sandy

 

This is, indeed, good news, and as others have said the workload and extra expense must be big. If someone doesn't shop much online, how can we donate to CMLSg? If you could perhaps give an address, details of payee for cheques or any way else, I'm sure several of us on this site could contribute.

With thanks again

Chrissie

Hi Chrissie, I have updated the 'About us' on the left hand menu and it now signposts our postal address more clearly. 

Should anyone want to donate, cheques should be made payable to CML Support Group.

Best wishes,

Sandy

Hi Sandie

So,what can be done to support the appeal? I am on Nilotinib right now, do they need living proof  that it works, if so I'm your man.

Get me on e-mail or telephone if needed. We beat them before!

 

Keith

Hi Keith,

thanks for the offer of help. However, the die is now cast and our grounds for appeal, as based on hydroxicarbamide being an inappropriate comparator, have been accepted by the Chair of the appeals committee. 

In this FAD- for 2nd line therapy in imatinib resistant and intolerant CML, nilotinib has been given a positive recommendation, whereas dasatinib and high dose imatinib have not been recommended. This is owing to the 'patient access scheme' offered by one drug company but not the other. So you can draw your own conclusions from this. 

We will appear in front of an appeals committee on 4th November to set out our case. Whether the panel will find in our favour is anyones guess, but we must remain hopeful.

At the same time we are currently working hard on the MTAppraisal for dasatinib, nilotinib and standard dose imatinib in first line use. The appraisal committee for this MTA meets on the 8th November and we will represent CMLSgroup at that meeting.

Hope you are continuing to respond well to nilotinib and that Carol is well also.

Best wishes,

Sandy