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Template letter to your MP regarding NICE appraisal of Dasatinb and Nilotinib

Sandy, Thanks for the further template letter for submission to MP's.
On rereading my MP's response to my earlier lobbying letter of November( based on the CML organisation draft), I notice that in his letter in reply, he says that the Conservative Party has made a commitment to ensuring NICE carries out its appraisal of new cancer drugs at the same time as drugs are licensed.
Whilst this is good news presumeably in the longer term ( assuming Conservative election success!!), it may not be much help to those awaiting the England wide prescription of Dasatinib and Nilotinib at this point in time. I've stressed the urgency of the matter and asked him to lobby health ministers.

hi Andy,
thanks for your note and continued pressure on your MP.
i have taken a look at the NICE website to try and find if the proposed appraisal has a date. according to the letter my MP received from the DH minister, NICE does now have the go ahead for a multi technology appraisal (MTA)for both nilotinib (Tasigna) and dasatinib (Sprycel).
if you take a look at the NICE 17th wave proposals for appraisal and scroll down the page you will find the MTA for nilotinib and dasatinib for use in resistant CML.
i sent an email to the given contact at the end of January (31st) but have not yet had a reply. i have put a copy of that email here so that others can also send emails and ask the same questions. it may help if more that one of us does it.
i have send another reminder email today and hope that the contact will get back to me. if i have no answer i will write again to the topic manager at NICE.
i have personally committed a lot of time to this and it is a frustratingly slow process, but i feel it is very important to go on. i am greatful that you are also keeping on.

the appraisals are not even started but we need to know the dates and timelines we are looking at so that we can assess when these drugs will be available for all UK CML patients not only those fortunate enough to live in the 'right' areas or be treated at the 'right' clinics.

i have included the link below to the relevant NICE page (which is a little complicated to find!)
it doesn't tell you much but at least we know it is in the system somewhere and it provides the correct email link for information.
...here

copy of my email to the NICE contact (jenniffer.alty@nice.org.uk):

Dear Jenniffer,

re: The multiple technology appraisal of dasatinib and nilotinib for imatinib-resistant chronic myeloid leukaemia

I am a CML patient advocate and cofounder of The Chronic Myeloid Leukaemia Group, UK.

I have been advised by the Minister at the DH, that dasatinib and nilotinib have now been referred to NICE for a multiple technology appraisal (MTA) and see from your website, that there was a consultation on the suggested remit, draft scope and provisional matrix of consultees and commentators between 19/12/07 and 28/01/08.

I also note that there will be a Scoping Workshop for the MTA on February 8th.

I very much welcome the availability of this information on your website and I am reassured that NICE have started the preliminary arrangements for the appraisal of dasatinib and nilotinib in CML resistant to imatinib.

You may or may not be aware that there are regional variations in England providing access to dasatinib for CML patients who are resistant to imatinib. This is having devesting clinical repercussions for some patients.

In order for me to best advise imatinib resistant patients who have currently been refused access to dasatinib by their PCT/NHS Trust I need to assess the probable time involved in this appraisal.

I have been informed by the DH that a standard appraisal normally takes 62 weeks from the date of referral, I would be grateful if you could answer the following questions:

a. What was the date the referral was made?

b. Is there now an agreed date (or an approximate timeline) that this appraisal will take place?

c. Does a multiple technology appraisal fall within the same timeline as a standard
appraisal, or does this
sort of appraisal (MTA) take longer?

d. If so, what is the timeline for an MTA?

I note that The CML Support Group, UK is included in the Provisional Matrix of Consultees and Commentators for this MTA and look forward to hearing from you.

I would be very grateful for your help and advice in this matter.

Kind regards,

Sandy ;o)

Anne is my local MP (Guildford)and has been very active on health matters for the Conservatives;I have used the templates to inform her of issues that we are concerned with and she has asked the PQ as below and others will follow.I quote her questions and the reply from Dawn Primarolo;this appears in Hansard.

"Leukaemia:Drugs"
Anne Milton:To ask the Secretary of State for Health (1)if he will make it his policy to instruct NHS commissioners in England to adhere to the guidance produced by the SMC on Dasatinib for the treatment of imatinib resistant CML,pending his publication of its appraisal by NICE
(2)when he expects NICE to issue guidance on (a) Dasatinib and (b)Nilotinib for the treatment of imatinib-resistant CML
(3)if he will instruct NICE to appraise (a)Dastinib and (b)Nilotinib for the treatment of imatinib resistant CML through the single technology appraisal process.

Dawn Primarolo:Ministers made a minded referral of dasatinib and nilotinib for the treatment of imatinib-resistant CML to NICE in October 2007.NICE's consultation on the remit and scope of this appraisal closed on 28 January 2008.It is currently proposed that these two products be appraised together so that the NHS has a single source of advice,but feedback of the results of this consultation is awaited.Ministers will make a final decision on the referral of these topics following receipts of a report back from NICE's consultation.
Good practice guidance published by the Department in December 2006 highlights SMC guidance as one source on which local NHS organisations can draw in making decisions on the use of specific drugs where NICE guidance is not available.
We have no plans to mandate the adoption of SMC guidance by the NHS in England."

Anne has also written to the Chief Executive of Surrey PCT regarding their policy towards the prescribing and funding of dastinib-the reply stated that all drugs which have not been recommended by NICE are funded only in exceptional circumstances.My consultant suggests that as a named patient for the prescribing of dasatinib in our PCT if I were to become resistant to imatinib then I might not be funded for dasatinib or nilotinib.A further posting follows re procedures in our PCT.
In the meantime Ann will pose some more PQ s and when we have all the responses will decide what actions to take next.
We need lots of letters to be written to MPs and to the Secretary of State for Health.
John Westlake

hello John,
thanks for copying the correspondance here. it makes for interesting reading. it seems that the DH keep saying that they are waiting for NICE (ie. the report from the consultation and scoping of the proposed appraisal) and NICE tell me that they are waiting for the final decision from the DH!
i am totally in aggreement with you that we need as many letters emails to be written by CML patients as is possible. i have once again written to my MP. Lynne Featherstone and am waiting for an appointment to see her at one of her surgeries.
meanwhile i will email the NICE contact again and ask her to comment on the Dawn P's comment that they are waiting on the consultation report to be sent from NICE. i will let you know.... probably on an new thread so we can keep this subject at the top of the agenda..... her answer. then we can update our MP's so they can pressure the DH further.
given that we are looking at at least 14.5 months before the publication of any appraisal... should NICE be instructed to go ahead.... we need to make the DH aware of the urgent needs of patients showing resistance to Glivec and living in PCT/SHA areas that are unwilling to fund Dasatinib.
but some PCT's have warned doctors that they should not consider putting patients on the ENACT (nilotinib)trials because they will not fund Tasigna either.
the ENACT trials are still open and recruiting until April... this is still a small window of opportunity for patients showing resistance now... Novartis UK has stated and assured us that they will provide continuation of the drug (nilotinib/Tasigna) for trial patients until it is available on NHS....
Sandy