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FAD? NICE delay's again!

CMLSg was informed that we should expect the FAD at "some point" last week- this was the second time we were informed there was a delay this time owing to "staff shortages". However, we heard nothing until Monday this week when NICE informed us that there would be further delay. It is not clear why this is or when we can expect notification of the combined FAD. We can only assume again that it will be at 'some point' this week ;o)... 

I am not sure if this is good news- but it is interesting. We have had two replies to CMLSg letters sent to Earl Howe- neither of which have said anything new but rather are vain attempts to not answer any of the specific points we have raised. 

My local MP (lib dem) has also asked questions of Earl Howe on my behalf- and I know that Richard, David C and others continue to apply political pressure. 

I note with interest that bosutinib has been accepted by NICE for STA (single technology appraisal) for first line use in chronic phase CML- David will be attending the scoping meeting on behalf of CMLSg.

Sandy

Having outlined in my post above that the letters CMLSg have received from Earl Howe (one on behalf of Andrew Lansley) were more or less unhelpful and disinclined to answer specific points outlining the inherent failings within the NICE system for appraisal of therapies for rare cancers in particular, I received the following from Stephen Dorrell MP - Chair of Health Committee. This is I think a more helpful response... and may represent a light at the end of a very dark tunnel?

Sandy

 

"Dear Ms Craine and Mr Ryner,

Thank you for your letter in May about the effects of the government's changes to the NHS on patients with rare cancers. I am sorry that it has taken some time to reply to you.

I appreciate that the role of NICE is a significant issue in the debate around the provision of treatment to cancer patients and others, and the issue of how the new commissioning groups will cope with the commissioning services for rare conditions is one that we have discussed in general terms with the Secretary of State and the Chief Executive of the NHS on more than one occasion. I will certainly bear you comments in mind as we continue to examine the governments plans over the coming months.

Yours Sincerely"....... etc.

Hi everyone,

My Mum got a reply from her MP in Epping, Eleanor Laing (Conservative). See below...

 

Thank you for your email regarding your daughter's treatment for Chronic Myeloid Leukaemia. I appreciate your conern on this issue and apologise for the dealy in my response.

The Government will introduce a new system of value-based pricing which will make effective treatments affordable to patients on the NHS. These plans will ensure that licensed and effective drugs are available to NHS clinicians and patients. The Government will focus NICE's role on what matter most - advising clinicians on effective treatments and quality standards - rather than making decisions on whether patients should access drugs that their doctors wish to prescribe.

As a result of these changes, NICE will not be able to issue formal restrictions on the use of treatments on the NHS. These decisions will instead be taken locally. I believe these policies will help to restore confidence in our drugs licensing system and help gain access to the medication that they need.

I share your concern on this matter and will speak to the relevant Ministers. Thanks you for taking the trouble to contact me abour this important matter.

 

I am not sure whether this helps with the Dasatinib and Nilotinib situation. What is 'value-based pricing'? Mum will write back to Ms Laing if we have more questions.

 

Thanks,

 

Stella

 

 

Hi Stella

In answer to your question, value based pricing is a new regime for pricing pharmaceuticals in the UK that is due to enter into force in about 2014. The idea is that the price of drugs available in the UK will be based on an assessment of therapeutic benefit, rather than the current system which doesnt really assess that but uses a kind of profit sharing arrangement (which is complicated but nothing to do necessarily with the value to patients...). In theory, the new system would be much better - therapeutically good drugs will get good prices, and we won't have the arguements we currently have with NICE over value for money on the NHS because the price fixing process should already have determined that. Thats the theory - no one has any real idea how ot would work in practice although I think most believe it won't be worse than what we have and ought to better for things like nilotinib and dasatinib.

In the short term however, nothing your mother's MP says will make any difference to the current assessment since value based pricing is at least 3 years away. Most MPs especially those in Goverment have given this stock answer (which they in turn have been given by the DoH). That she will speak to Ministers is helpful and good for raising awareness, but none of these responses deals with the current problem.

I have just had a further reply to my most recent letter to the DoH, in which they maintain the line about independence of NICE and how the government can't get involved. They have to say this - the plus side is that this is a campaign that has been persistent, and there have been further issues with NICE refusals of cancer therapies recently. So I am hopeful that the private deliberations and discussions may lead to a different outcome and if in the short term they don't we will continue during any appeal process. I would at that point write again to your MP. If you wanted to go back now, what I would say is many thanks for the reply but how will value based pricing help the situation for patients who may need these two drugs before it is in place?

Best

Richard