I am sure you all have your view on the FAD but for those of you who wish to communicate how you/we feel about the potentially disasasterous situation for UK CML patients in England and Wales should this FAD be upheld (and we are currently drafting our formal appeal against it) you might want to contact your local press.
I have therefore copied the local press contact below with the exact requirements of each request.
Both Bob and Chris have agreed to contact their local media. Many thanks to both ;o)
We have had some discussions about the general situation should the appeals fail. The point was raised that the Welsh health authority would be expected to withdraw their present agreement to offer all TKI's- including HD imatinib.
As for newly diagnosed patients and those who might develop IM resistance or need to change therapy after the TAG- patients in Wales who develop resistance or inolerance, might well find themselves in the same boat as those who live in England.
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Ist chance with 400mg imatinib,
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2nd chance with 400mg BID nilotinib.....
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if dasatinib is needed then a visit to the cancer drugs fund-
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if unseccessful or if CDF has reached its limit for that year...
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one of the newer TKI's in clincal trial- or
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a stem cell transplant if a donor is identified
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or.....palliative care!
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Oh sorry I forgot interferon!
As for Scotland- although the SMC would be expected to follow NICE final guidance (TAG)- they do have greater autonomy than Wales, so we are not so sure that the SMC (Scottish medical consortium) would do a U-turn on their present reimbursement decisions re: dasatinib/HD imatinib/nilotinib... including nilotinib for first line use as announced last week.
I don't think a U-turn would go down too well with Scottish citizens and patients!
Should the various appeals against the FAD not be successful, NICE will publish the TAG (technology appraisal guidance) in November 2011.
List of Local/Regional News Media contacts:
Evening Standard - freelance journalist Sophie Goodchild, also interested in individual case studies in London. mobile: 07767 325 595
emails goodchildsophie@hotmail.com.
Bristol Evening Post - Vikki Mathias Health reporter, 01179343413
email: v.mathias@bepp.co.uk
Local patient by Tues 23/8 or Weds 24/8 please. I think deadline has now passed.
Birmingham Mail
Alison Dayani, Health reporter, tel 0121 234 5651
email: alison.dayani@birminghammail.net-
Local case study request
The Gazette (Blackpool)
Emma Harris/ Jon Rhodes, Health reporter / reporter, tel: 01253 361 737
email: emma.harris@blackpoolgazette.co.uk or
jon.rhodes@blackpoolgazette.co.uk -
Interested only if patient is in the area
Cornwall Penryn Packet (Group)
Paul Armstrong Editor tel: 01326213336
email: paul.armstrong@packetseries.co.uk
Interested with case study
Hull Daily Mail, Katie Wood, Health News tel: 01482315351
email: k.wood@mailnewsmedia.co.uk
Local case study request
Manchester Evening News, Sarah Lester, News Editor, tel: 0161 832 7200
email: newsdesk@men-news.co.uk- Local case study request
Newcastle Evening Chronicle, Helen Rae, Health reporter tel: 0191 2016269
email: helen.rae@ncjmedia.co.uk- Local case study request
The Star (Sheffield), Newsdesk tel: 01142767676
email: news@thestar.co.uk
Interested with case study
Shropshire Star, Newsdesk, tel:01952 242424
email: newsroom@shropshirestar.co.uk
Request for patient in Telford area or Shrewsbury area
South Wales Evening Post (Swansea), Liz Perkins, Health tel: 01792514615
email: elizabeth.perkins@swwwmedia.co.uk-
Ideally a patient in Swansea... any members of naomii's facebook page? 
Western Mail (Cardiff), Madeline Brindley, Health reporter tel: 02920243616
email: madeline.brindley@mediawales.co.uk-
Expressed an interest in case studies- naomii's facebook page
The Sentinel (Stoke), Dave Blackhurst, Health reporter tel: 01782 602540
email: daveblackhurst@thesentinel.co.uk
Preferably story of a local patient who couldn't access an approved drug and now can!
Wirral Globe, Craig Manning, Chief reporter, tel: 0151 906 3050
email: cmanning@wirral-globe.co.uk
Patient must be from Wirral
Express and Star (Wolverhampton), Jim Wildman, Reporter, tel: 01902 319410
email: newsdesk@expressandstar.co.uk- Interested with case study
Yorkshire (whole county - for Y. Post) Mike Waites, Health reporter, tel: 01132388544
email: mike.waites@ypn.co.uk-
Interested with case study- Yorkshire CML Group?
Milton Keynes Citizen, John Fletchley, Editor in Chief, tel: 01908372279
email: editorial@mkcitizen.co.uk
Interested with case study......I think Bob is covering this one 
Leicester Mercury, Cathy Buss, Health Reporter, tel 0116 2224261
email: catherinebuss@leicestermercury.co.uk
Local case study request- Chris might be covering this one.
