Petition on Vidaza presented to No 10

A petition is being presented to the Prime Minister today (May 17, 2010) sparked by the National Institute for Health and Clinical Excellence(NICE)'s decision not to make Celgene's Vidaza (azacitidine) available through the NHS.

The petition comes hot on the heels of Conservative electioneering and media coverage of the Party's pledge to reform drug pricing to ensure that patients will have access to all  clinically effective treatments, especially cancer drugs. 

During the run up to the General Election, eight cancer patient support groups came together to express their extreme disappointment about NICE's decision, in which NICE recognised that azacitidine was clinically effective and that it should be seen as a life-extending end-of-life treatment, but decided that it should not be provided through the NHS on cost-effectiveness grounds. 

David Hall, chairman of the support group for the bone marrow disease myelodysplastic syndrome, the MDS UK Patient Support Group, and himself an MDS patient said: "For the sake of all UK patients with this cruel and debilitating disease, we cannot accept the NICE guidance on azacitidine, which is currently the only licenced drug available to treat MDS specifically. 

"We hope the Prime Minister will share our view – and the view of everyone who signed the petition – that it is unacceptable to deny life-extending treatment when no other option is available to patients with MDS."

Supporting the petition, Alastair Kent, chair of Rare Disease UK commented: "This is another example of the difficulties therapies for rare conditions face in satisfying NICE's criteria. Due to the small market to recoup the significant research and development costs and the difficulty in collecting data on effectiveness, therapies for rare conditions are often expensive and at the high end or beyond what NICE considers to be cost effective using the ICER/QALY analysis. 

"We believe the Department of Health[DH] and NICE need to work with patients to ensure the technology appraisal system can judge rare therapies which fall outside the threshold fairly."

The petition asks for the same standard of care for UK patients with bone marrow disease as is available throughout most of Europe. 

Petition organiser, Dr Dominic Culligan, from the UK MDS Forum, a body representing blood cancer consultants, said: "As members of the UK MDS Forum, we strive to ensure all of our patients receive the best possible care and we consider azacitidine to be a very valuable resource. Our patients include people who have experienced over seven years survival benefit as a result of receiving this treatment. In addition, we have undertaken groundbreaking trials here in the UK, which have brought significant advances in standards of care for people experiencing MDS. If we are denied access to this treatment in future, it will make continuing high-quality research here in the UK much more difficult."

On June 1 the MDS UK Patient Support Group will be one of eight organisations appealing against the NICE decision on azacitidine.