Granada Reports and BBC North West Tonight Regarding todays's NICE meeting

I have just got back home to London and I must join with Peter in thanking everyone who made such a great effort to get to Manchester today.
I want to thank in particular those of you who stood outside the entrance to the NICE building with your placarded messages- arriving at 9 am in good time to catch the committee members going in. It was evident from the chair's preamble at the beginning of the meeting that your messages had struck a chord, as had the petition and the wider political pressure from our MP's.

It is still not clear to me how the committee will move on this- they may find for nilotinib but against dasatinib- as Novartis surprised us with an offer of a patient access scheme (PAS) which has apparently been accepted by the DOH for consideration- in other words they have offered a discount. We shall see how that affects the whole appraisal.
I strongly believe that we need the choice of both drugs..... it will now be a tantalising wait for some days or even weeks.
I really hope for good news but I cannot second guess this committee and as we were not party to the second part (closed) meeting when they would have been more 'free' to express themselves then it is anyone's guess how effective our campaign has been.

I know that there is a lot riding on this for many people- if the FAD is negative for one or both drugs, then we will fight on- within the NICE process by following their appeal guidelines but also by continuing to apply political pressure as an organisation and as individuals. We know the drugs work, they work well for the vast majority, we need them to be available in one way or another.
Let's hope for a good outcome.

It was inspiring to meet all of you.

Sandy

Carol and I would also like to add our thanks to all of you who turned up with placards and determination in front of the media at the NICE Building from far and wide.
We would also like to thank all those who were admitted to the inner sanctum today. It was a bit like prison I imagine(being escorted and counted in and out of the toilets.)
We found the meeting quite emotional.
Let’s hope that with everything now presented to the NICE committee including the petitions which were referred to, that they make the right decision and allow choice to us all and not count the pennies.
It was nice to meet lots of new faces and look forward to seeing you again in the future.
Best wishes
Steven and Carol

Great privilege and pleasure to join the placard holders outside NICE (thank you Kath for the brilliant placards).

Really good Stella was there, as the local press understandably insist on interviewing local people- and she proved it's not just an isolated issue for one or two people - CML sufferers are everywhere.

From my little experience of government lobbying, I'd offer some comments:

The decision is now due to be reported in the middle of the holiday season - perfect time to "bury" bad news, so prepare for the worst.
Seems to me there is a desire to fudge the issue of funding long-term treatments that cost as much as the drugs in question: the Coalition Government would rather not be seen to have any policy on the issue but leave it to PCTs (under the post NICE model for funding)
What the Government clearly might like to have (I'm guessing here, but it seems consistent with what's happening) is for there to be a precedent which PCTs can follow - no matter it has been arrived at with precious little credible rational decision making process or assessment.
Query: does the irrational manner in which this decision is being reached, albeit by an independent body, fail to honour the patients' human rights or that of their dependent children e.g. to a family life (or any other of the human rights protected in the UK)? Do we have any human rights experts we can talk to?
As far as our message goes from now, do we need to consider how this decision could affect the way other treatments will be assessed in the future? Is the government effectively ducking the issue and getting away with it?

Playing Devil's advocate, if I were trying to help those who want to avoid any further media fuss about this decision, i'd be recommending everyone (NICE, MPs, Ministers) all stick to the simple line, "We wait the announcement of NICE's decision in ... weeks time, it would be premature to comment now". Media hate reporting this kind of statement - it's not news. Waiting until there IS news would give enough time for the story to "disappear" as far as the media are concerned. When the decision is announced, it will be difficult to raise interest if no-one in NICE or Government at a senior level is available to comment - and, of course, they will be away on holiday ... when (the House of Commons goes into recess on the 19th July)?

Thanks to everyone there in Manchester,and those who were there in spirit. It was encouraging to see the onenesss of support in this battle for the drugs we all so deserve. The fight will not end here. Let's encourage each other to continue until everyone has the appropriate treatment for CML. We battle on. Special thanks goes to Sandy, Peter and the other 4 members who observed the meeting and a special thanks to those who made our feelings felt outside NICE.

Dear Patricia... thank you so much for joining us both at Manchester and now here on the forum- I hope you will continue to post here. It was wonderful to meet you.
Thanks so much for your support,and welcome to this forum.
Sandy