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Letter to MP

I am no expert, but have used the Dasatinib/Nilotinib template letter, and updated the current state of play from the Newswire of 27 Feb. I will be sending it to my local MP for Mid Bedfordshire, Nadine Dorries who appears from other issues I have seen in the press, not to be backward in coming forward. I have urged her to raise the issues in the House of Commons as suggested. If she does so, and I have any effect on the issues, then great. I thought I would raise it on the forum, as previously I have read with interest but not actually followed it up. Now I have, and hopefully others will too.

Best Wishes,

Phil.

Dear Phil, thanks so much for taking this up. i hope my update was clear and you were able to change the original template to reflect the changing position.

the more MP's that speak out the better. the DH will probably hate us but hey!!! that's life ;o)

Sandy

Hi Sandy,
Answers to Anne Miltons first set of PQs were posted under a previous thread on 21 Feb and other readers may have seen these.
Anne has written to me to say that if we are not satisfied with the responses then she is happy to frame some pursuants-follow up questions.

Below are further sets of PQs -I quote in detail because it might be useful for others to target their MPs and the Department of Health especially where questions are not being answered in full and where there might seem to be contradictions in policy and so on.

Written answer Monday 25 February
"Review of Cancer Drugs
Anne Milton
To ask the Sec of State for Health whether the National Cancer Directors forthcoming review of cancer drugs will evaluate geographical variations in the use of cancer drugs(a)approved by and (b)awaiting appraisal by NICE
Ann Keen
The National Cancer Directors forthcoming review of cancer drugs will evaluate the usage of NICE approved cancer drugs.It will not evaluate the usage of cancer drugs awaiting NICE approval.
It is expected that the evaluation report will be published before the end of the year.

Dasatinib and Nilotinib
Anne Milton
To ask the Sec of State for Health what assessment he has made of the variations between primary trust areas in patients ability to access the treatments (a)Dasatinib and (b)Nilotinib for imatinib resistant CML
Ann Keen
No assessment has been made of the variations between primary care trust areas in patients ability to access the treatments dasatinib and nilotinib for imatinib resistant CML
However Ministers are minded to refer dasatinib and nilotinib for the treatment of imatinib resistant CML to NICE as part of the 17 th work programme.NICE has consulted with stakeholders on the remits and scopes for this appraisal.Ministers will make a final decision on whether to refer this topic to NICE following the outcome of NICE s consultation

Anne Milton
To ask the Sec of State for Health what representations he has receieved in the last 12 months on the issue of availability of access to(a)Dasatinib and (b)Nilotinib for the treatment of imatinib resistant CML;how many representations were received from (i)clinicians(ii)patients and (iii)others;what the content was of the representations ;and if he will make a statement
Ann Keen
The Department has received various correspondence from clinicians,patients and others about dasatinib and nilotinib.This correspondencemainly raises issues around access to dasatinib and nilotinib and the possibility for their appraisal by NICE "

Some additional points -I sent Anne Milton the previous template plus correspondence in January and Ann sent it to Dawn Primarolo.We have a reply and one interesting paragraph reads
"Decisions to fund treatments by PCT s in consultation with the healthcare professionals who are best placed to decide on the most appropriate treatments for their patients.We have made it clear to the NHS that it is not acceptable for funding for licensed treatments to be withheld from patients simply because NICE has not published guidance on them.In these circumstances we expect PCTs to take full account of available evidence when reaching funding decisions.This is confirmed in our good practice guide issued to the NHS in December last year"
So Department of Health seems to be speaking with a forked tongue as it will not issue a mandate to PCTs but expects them to follow good practice.

Just one for the road re Westminsters relation with Scotland-
"If NICE were to come to a different conclusion to the SMC about a medicine then the NICE decision will normally take precedence since it will usually have been informed by more evidence on clinical effectiveness"Dawn Primarolo said

Just imagine if ,as Sandy you say that, the QUALY is reduced as from April next from £30k to £20k then will dasatinib and nilotinib pass the test under these new criteria- that is if NICE go ahead with the Single technology appraisal?
I am not a health economist but in my opinion we need to ask some questions re the implications of the proposed changes to the QUALY.
More to come in later postings ,but suggest we all keep up the letters and Emails to MPs
Best wishes
John Westlake

Dear John, well done in keeping your MP updated and asking for her continued support in asking questions.

the appraisal will definitely be an MTA and not a STA. NICE have assured me of that. and yes, the QUALY is the basis of all appraisals, so the reduction from £30,000 to £20,000 will mean that 'expensive' cancer drugs coming down the line will fall at that hurdle.
thanks again, look forward to reading answers from the DH ;o)

Sandy ;o)