More delay on FAD

Hopefully good news - there seem to be so many holes in the ACD and the modelling used, and that with talk about cancer drugs funds and a new government in place make, me hopeful that this may end up being reconsidered.  It should be.  Who knows what else may be going on, too.  Fingers crossed. 

For some time I have been lobbying my local MP over the availability of dasatinib and nilotinib and whilst in opposition she was very helpful in framing Parliamentary Questions to the previous government.She now holds a position in the current government as a junior Minister for Health -recently I asked her the following and this has been passed to the Ministry of Health and I still await a reply.

In short I asked-

1Is the Conservative Party policy on the availability of cancer drugs as stated prior to the election still on track as a coalition government policy?

2If so, then when will this policy become operative?

3Given that NICE is due very soon to pronounce on whether dasatinib and nilotinib be available under the NHS in England and should access be denied what instructions will the government give to PCTs such that patients already being prescribed these drugs be allowed to continue?

4If the new NICE guidance denies access to these drugs under the NHS what measures will government take regarding patients newly seeking access to these drugs such that they are not in a worse position than before?

5If the government intends to implement its new policy on cancer drugs at a specific point of time in the future what measures will it take to safeguard the needs of CML  patients in the interim?

6Will the goverment continue to accept the perverse outcomes from NICE that conflicts with availability of life saving drugs to treat leukaemia in Scotland (as per guidance given by the Scottish Medicines Consortium) and many other European countries?

I will report back when I receive a reply

With best wishes

John W

Please see the content of my previous representation to my MP Anne Milton (now a Junior Minister of Health) -posted in this same thread earlier in the month.I sent an Email to Anne Milton on 8 June and it was forwarded to Department of Health for response  and a letter dated 21 June was today received from Earl  Howe as Parliamentary Under Secretary of State for Quality as Minister responsible for this policy area and in particular responsible for NICE .

The responses are as follows(my summary)-

NICE has issued draft guidance that does not recommend the use of dasatinib and nilotinib for the treatment of CML and registered stakeholders had until 7 December 2009 to submit comments.NICE's Appraisal Committeei is considering the responses to the consultation and the Institute currently expects to issue its final guidance to the NHS later this year.

I am sure that your constituent (i.e.myself) will appreciate that it would not be appropriate for the Department of Health to intervene in an ongoing appraisal.As the constituent is aware there are several patient groups that are registered stakeholders in this appraisal and it is through these organisations that patients are advised to raise their concerns.

Where NICE guidance is not yet available for a treatment,the NHS Constitution gives patients a right to expect local funding decisions on the availability of drugs and treatmentsto be made rationally and on the basis of the available evidence.NHS organisations are also required to have processesin place for the consideration of exceptional caseseven where NICE has not recommended a particular drug or treatment.

The Government will set up a Cancer Drugs Fund as from April 2011 as an interim measure pending reform of the way drug companies are paid for NHS medicines.Money saved by the NHS will be used to help patients get the drugs their doctors recommend.The Government wants patients,clinicians and the wider NHS to input into the design of the Cancer Drugs Fund.

With regard to the constituents point about Englands system of drug appraisal in comparison with European countries,I  (being Earl Howe) should point out that most European countries have health systems which are set up differently from the NHS and which are funded in different ways ,making it difficult to make meaningful comparisons. NHS matters relating to the domestic populations of Scotland are devolved.  (I am not making politics here but ,I am  not happy with this  response as the current government used these comparisons as a plank when they were in opposition earlier this year)

 The Earl Howe ,Parliamentary Under Secretary of State for Quality(Lords),Department of Health,Richmond House,79 Whitehall,London SW1A 2NS

My view is that there has been government and political  intervention to slow down the NICE  process so that there is less time available for dispute and for them to be embarassed before the launch of the Cancer Drugs Fund next April-because for sure dasatinib and nilotinib must be candidates for inclusion in that? However the next challenge is to make sure these are included.

I suggest that we keep writing to MPs and to Earl Howe and it would be intersting to see if we get similar responses to mine and medium term we need to make inputs in to policy for the Cancer Drugs Fund.

Any views welcome but let us keep up the pressure

Best wishes to all

John

johnw1001