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Number 10 petition response.

Well, just as expected the response to the Number 10 petition is....well, just that really, a response but without substance. I like the bit where they say that patients can get advice from the patient groups who are consultees to the NICE process ;o)

We will of course continue to fight on for full access to both 2nd generation drugs for imatinib resistant AND intolerant patients.... but NICE are playing a devious game in separating the two patient groups- i.e intolerance to imatinib will continue to go through the current ACD, whilst resistance to imatinib will be separated from the current ACD and included in the re-appraisal of imatinib and compared with high dose IM- at a later date.

For intolerant patients it is pretty disastrous if the FAD finds against both drugs. This means that the very small population of patients who develop intolerable side effects to IM and are unable to take it will be offered...what? Nothing that controls their disease in the long term. I don't think this would be acceptable- especially when you think about how many patients in England develop intolerance... very few. Of the 25-40% (figures vary) who fail IM only 20% of them fail because they are intolerant. That means that we are talking about very small amounts of money here so cost savings to the NHS budget will be - nothing in the scheme of things. Time lost to missed appointments cost the NHS well over £500 million per year -which could be saved with a reminder phone call to patients, just like your dentist might do- so what price a life?

I really hope that the appraisal committee will somehow feel the moral outrage and produce a FAD for IM intolerance is in favour of 2nd generation drug therapy. If the FAd is negative then...... we have a long and painful fight on our hands.

For IM resistant patients it might look like a new ACD comparing it to high dose IM is good news of sorts.... but I am not so sure. The danger here is that HD IM will also be refused along with both 2nd gen drugs. Call me cynical but.....!

Sandy :0/

The Prime Minister's Office has responded to the petition and you can view
it here:

www.number10.gov.uk/Page22361

The problem is that the QUALY (Quality of life years) cost has recently reduced from £36000 per year per patient to £30000. The second generation drugs appear to be in this bracket (Dasatinib = £31,627 pa) as opposed to Imatinib (£29,194 pa). Figures from scottishmedicines.org
So, NICE is happy to allow these people to die for the sake of about £2500 per year. Imatininb resistant or intolerant patients should move to Scotland, where the treatment is free.

Yes Richard, and also Wales. I was in touch with a member of ours last year who had to do this. But we need to fight for parity with the rest of the UK and Europe.
Best wishes,
Sandy

Wasn't there a discussion/change in NHS funding where patients could top up funding for medication where the NHS wouldn't and not impact their NHS funding.

I know for some people finding that extra £2,500 would be tough but for others it could be possible.

Also If i was the maker of Dasatinib and I knew about the cut off point of £30K for getting the drugs through NHS I would have made sure my pricing structure fitted into that...probably not as simple as that

rob - http://cmlblog.spaces.live.com

Yes, I know, but, as a welshman, I didn't want to be partisan! I live in England, but, although the side effects of the Imatinib are uncomfortable, I am not allergic to, or intollerant of it. My heart goes out to those who are.

Hmm, don't be too confident about the position in Wales. The AWMSG says very clearly on their website that NICE judgements take precedence.

Janet