You are here

NICE -topic suggestion

thanks to all those who have taken the time to fill in the NICE topic suggestion form. i have just completed it on behalf of The CML Support Group (us). it is really a firt step in a growing campaign that we feel will gain momentum as we hear of more and more cases where cml patient's care falls within short-sighted PCT's. i have heard of one case where the patient died because his doctor could not persuade the pct to agree to fund dasatinib.
yet another, where the patient had responded to dasatinib but whose pct has now withdrawn funding. i am afraid the situation will get even worse over the coming months and we may hear of more deaths.
we really do need to understand what the debate around funding the NHS and the human cost involved if we dither about what to do. the situation will get worse for people who cannot afford to pay for private health insurance or shared private ins./NHS care.
please read the BBC online articles below.

http://news.bbc.co.uk/1/hi/health/6652183.stm



http://news.bbc.co.uk/1/hi/health/6646259.stm



we need a NICE assessment on Dasatinib so that pct's cannot hide behind ingnorance or confusion when assessing the costs.
we will also see the same problems with accessing nolotinib (tasigna) when it comes out of trials later this year (even though novartis will fund the drug for 12 months after the trials are closed. i have heard that certain pct's are already flagging up the message that they will not pay for this drug when the ENACT trials close.

sandy



http://news.bbc.co.uk/1/hi/health/3444635.stm

sandy C ;o)

The UK has one of the worst records over access to new cancer drugs as stark inequalities exist across the world, a Swedish study has found.

http://news.bbc.co.uk/1/hi/health/6638617.stm

sandy C ;o)

Hi Sandy,

I do not understand the process in which NICE decide what drugs to assess, I find it astonishing that they have not even been asked to look at it. Which public bodies or individuals actually put forward drugs for them to assess ?. You are right about needing to gather momentum about this, as it is cancer week on the BBC, would it not be an idea to contact them as a group maybe via the BBC website , giving a backround of the fantastic progress in treatment we have seen and are seeing, and that some people may now be denied this, unless they live in Scotland. I am also thinking about contacting my local MP, this is nothing short of a disgrace.

Craig A

h craig,
it really is down to the DoH (dept. of health) to decide (ultimately) which drugs/procedures are put through the NICE appraisal system.
remember that NICE is a government body set up to try and overcome the postcode lottery....... and also save money.

please do write to your MP ... when we have a little more time we plan to put template letters on a separate page so that people can use them to write to MP's/local and national media/PCT managers/clinicians and of course the the DoH...if yo do write a letter to your MP you could share its content on that page?
i agree that this is a disgrace but it is a a vision of the future should we allow our the plans for private insurance schemes alongside NHS contributions to be put in place. it will then be a two tier system which goes against the whole ethos of our national healthcare system.

as you can imagine this is taking up a lot of my time at the moment. david cornes (one of our advisory panel members) and i have been working on a letter to send to various government bodies involved in the NICE process......
sandy C ;o)

After Robs appointment with Graham Smith on 13 April Rob has been lucky enough to get Dasatinib easily. Our pct had already funded it for one patient and had told the Haematologist at our local hospital that they were free to use it for other patients they thought neccessary. Graham Smith was extremly surprised to hear that Rob had started on it within a fortnight. He had warned us that we may struggle to get the funding. He also said that he didn't expect nice to even consider dasatinib for 2 years! I'm sure you all agree that is far too long to wait, which reinforces your efforts to encourage us all to put pressure on the government/department of health/nice etc, we've filled out the nice form and will be contacting our mp. Everyone who needs it should have the same chance Rob's been given.
Sal

hi Sal,
thanks for your note about Rob's experience. it is heartening to hear that not all PCT's are prepared to be party to such short-sighted and cruel cost cutting. it is true that some PCT's have managed their budgets well and are not in the position to have to cut costs by putting cancer patients lives at risk (to put it mildly)
thankyou for joining us in our efforts so far.
sandy C ;o)

Hi Sandie
Here we go again ! STI all over again. Possibly have the same problem myself with Dasatinib. You will rmeber that when NICE revued Glivec, they did send me their primary report for a 'patient comment' I did as asked which took nearly a week, and duly sent it back to them, and guess what, every margin note and error in evidence was totally ignored, felt like that one had been patted on the head, and that NICE were going thro' the motions as instructed by HMG. I do feel very angry that this situation has arisen and will continue to arise, when HMG are wasting lorry loads of cash in futile directions. Please advise if I am able to constructively assist.
Keith

We are caught in a 'cleft stick' in terms of funding any new treatments whether for cml or other conditions. On the one hand NICE has to make deliberations and recommendations, on the other hand local health authorities have to blance the needs of the patients for whom they are responsible against what funding they have available.
This is why, I think, we are seeing 'patchy' response to availability of Dasatinib. It's not a satisfactory state of affairs when availability of the best treatment of your condition depends upon where in the UK you live.
Another problem which we face, is that there is a considerable increase in the numbers of new medications available to treat other forms of cancer, which also are high cost, which compete for a limited NHS drug budget. Another big issue for cml patients and funding the medication is we are talking lifelong treatment, whereas for other cancers it is usually a limited course of treatment. Thus treatments for cml will have a bigger impact upon NHS budgets.
I have recently read an article where there are comments about submission of requests to NICE, the writer suggests that patients groups should also be active in trying to pressurise the drug companies to bring down the cost of their drugs!
In the case of Glivec this may be a possibility - it's been around for five years now, at a very high price, but as for the new drugs, there is no way they are going to be marketed at lower prices because the drug companies will need to recoup the hugh amounts of money which they will have invested in researching their product and bringing it to the market.
We as individuals and as a group will have to keep the pressure on in various directions in order to ensure the medications are available to those who need them.

Paul