Only just remembered in time, but the deadline for comments on the ACD is upon us. Filled my form in just now. The last day for comments is tomorrow, March 2nd.
None of us know when we might need these drugs. Please everyone, make one more effort to voice your concerns to N.I.C.E.
http://www.nice.org.uk/guidance/index.jsp?action=article&o=47297
Thanks Dennis,
you have continued to work hard to remind people and the spread the word about the petition. - which although it has been viewed over 1.500 times only a fraction have taken the trouble to sign.
But I do thank all of those who have. We are currently at 699 and I will be writing to remind those who have not yet signed to please do so before March 9th.
WE REALLY SHOULD ALL SUPPORT THIS.
I am still waiting to hear from NICE whether I will be allowed to attend the meeting in Manchester and I am finishing off the official comment that CML Support Group will give as official consultees as we cannot put the comment through the NICE website.
I know that some of our clinicians have commented there as individuals and I know they support us.
Should NICE refuse to change this recommendation it will have a knock on effect for patients in Wales and Scotland. There are no guarantees that either the SMC or the AWMCG will continue to fund for intolerant patients. In fact I understand that the SMC have always followed NICE recommendations for MTA (multi-technology appraisals -more than one drug) even though they haven't for STA's (single tech.appraisals- one drug)
It is a very worrying time for CML patients everywhere in the UK
Thanks again for reminding people..........
p.s all NICE direct links are on the press statement (scroll to bottom of page) under Newswire.
Sandy
Like you Dennis, I only just completed my comments today. I seem to have spent the whole day writing them, after deliberating over this for weeks! Bhiru's just finished hers too.
Currently pushing my Dad and brother to get theirs done in time.
I think we're all probably struggling to stay motivated. I'd like to re-iterate Dennis's sentiment, though, and ask anyone who hasn't written their comments yet to do so. It's more important to make at least one valid point than nothing at all!
By the way, when NICE released their press release about this ACD, I got in touch with BBC London News TV and the London Evening Standard. They both ran the story a couple of weeks ago. So NICE are still being put under a bit of pressure.
I just hope they see sense!
Jed
PS. Sandy, I've started pushing all I know to sign the petition and forward it on. We all appreciate all the work you're doing for this, and can assure you that we're also doing what we can.
Dear Jed,
I know there are many of us that are continuing to work hard to keep this story 'alive'.. .... and yes I understand why you have deliberated over just what to say on the NICE website. I am still typing and re-typing here at 1.47am so that we can give it our best shot!!! I view all this as a collaborative effort... international as well as here in the UK. Some of those who have signed the petition are from the wider 'global family' of CML patients and doctors and I am moved by the expression of support we are getting. It gives me the strength to carry on with what I sometimes feel as a struggle that cannot be won. But that is when I am tired and down.... and I know that we must continue to believe it is possible for us to win this. NICE has understood that if they separate the groups of patients then they just might get away with it... divide and conquer.
Thanks again for your hard work and asking people to make the effort.... re: the petition, we have 740 signatures (as I am looking now at the counter) slow but rising. and thanks for your update.... It helps to know.
Sandy
Just to add recently joined the site, so my first post, but on Imatinib for four years now, have signed the petition and got family members and friends to also sign even a friend in Oz. Would like to say Thankyou to Sandy for all her efforts, we are so grateful to you. I live in Norwich, and treated at the Norfolk and Norwich Hospital.
All my comments have been made. Pleased that so many have signed the petition and posted such excellent comments - our family, friends & friends of friends have all contributed & continue to do so. I'm sure, Sandy, that you will produce yet another excellent document & I join the many in saying thanks. Whatever the outcome we have all given it our best shot & deserve the sensible response.
Irene
Having studied the latest NICE ACD in order to submit comments by yesterday's deadline. I was horrified to discover that the 'concession' for existing Dasatinib/Nilotinib patients to be able to continue treatment (which had been included in the first ACD in November) has now been removed!
Presumably this means that any of us who are Imatinib intolerant face imminent withdrawal of these treatments if NICE approve the recommendation next week?
I am currently awaiting results of my 4th bone marrow test after the previous one last November had shown a reduction in my BCR ABL level from 94% to 27% following 3 months treatment with Dasatinib (reduced dose of 20mg only), having failed previously on Imatinib (I think from intolerance and resistance). I was delighted with these results but am now not sure where the latest NICE recommendation leaves me?!!
I am in the process of writing to my MP again to continue the battle.
Thanks for all the postings on this forum. I have found them extremely helpful and encouraging.
Best wishes to all.
Alyson.
Dear Don... you are so right, this does affect all of us and the people that have signed the petition and left messages of support prove the point. We are an international community, and we are growing in strength because of that. The internet has made this possible and the patient forums consolidate our knowledge and encourage us all to try to make our voice heard. I read the petition each night and continue to be moved by the expressions of solidarity... the world is watching NICE. I wonder if they really understand that.
Thank you for your support...
Best to you as always,
Sandy
Dear Alyson,
Your are right and it is a BIG concern ..... I am not sure about the legality of such a move though and I think it would be really hard for them to take treatment away from patients who are already responding. They have stated that they accept that both dasatinib and nilotinib are effective, especially in the IM intolerant group.
I have been invited to attend the first half of the meeting on 9th of March... but with a gagging order. Invitees will not be allowed to ask questions or make statements, only observe. The second half of the meeting will be closed to all but the appraisal committee, and this is when they will make their decision and produce the FAD..
Even though I cannot comment during the meeting I hope that my presence will at least remind some of them that patients are human beings and not statistics.
When they produce the FAD - up to 30 days after the ACD meeting - we have some further rights to appeal. I will continue to keep the petition online after the March 9th meeting and I hope we can attract more signatures. I am at a meeting during the weekend and will do my best to encourage more to sign up.
The other worry is that patients in Wales and Scotland will also be affected as both regulatory bodies might well follow NICE and withdraw funding for IM intolerant patients. Scotland have always done this with previous Multiple Technology Appraisal's. Wales have not approved NHS funding of nilotinib as yet so they are obviously waiting for the NICE recommendation.
I did manage to get our comment in to NICE within the deadline yesterday and I got both Leukaemia and Lymphoma Research Fund and Macmillan Cancer Care to join us and lend their support (and logos) to the submission. This can only be good as both organisations are well respected. I noticed that L&LRF have singed our petition as well as at least 2 European CML doctors. ;o))
We do have a lot of support from the international community as well as from specialist clinicians in the UK... who are just as upset as we are.... we can only hope it is enough.
I think it is a good idea to contact your MP again on this and I will be doing the same.
Sandy
