Bone marrow patient support group angered and disappointed by SMC final decision on Vidaza30 Dec. 2010
London, 12 April 2010 – The MDS UK Patient Support Group today expressed its anger and disappointment at the announcement by the Scottish Medicines Consortium that is not recommending Vidaza (azacitidine) be made available through NHS Scotland to patients with a range of life-threatening bone marrow diseases.
Approximately four in 100,000 people in the UK have myelodysplastic syndrome (MDS), a group of debilitating bone marrow diseases that lead to complications such as recurrent or life-threatening infections or bleeding. Most MDS patients have to rely on frequent blood transfusions to manage anaemia and extreme fatigue. While the average survival of patients with MDS is about twenty months, nearly a third (30%) progress to acute myeloid leukaemia (AML), a very aggressive and resistant form of leukaemia with an average survival period of a few months only.
A study published in The Lancet Oncology demonstrated that the median overall survival for higher-risk MDS patients receiving azacitidine was 24.5 months compared with 15 months for patients receiving conventional care such as supportive care or chemotherapy – a difference of 9.5 months. The study also showed that at two years, the survival rate for patients receiving azacitidine was just over 50%, nearly double that of patients receiving conventional care (26%).
David Hall, Chairman of the MDS UK Patient Support Group and MDS patient said, “We are extremely disappointed that the Scottish Medicines Consortium has rejected the only drug proven to give MDS patients more time and a better quality of life. Azacitidine is the only licensed drug currently available to treat MDS specifically and is available to patients throughout most of the European Union. So while a patient in Romania can have access to the most innovative and effective treatment for MDS, this decision means a patient in Edinburgh or Glasgow will be denied that access.”
In supporting the MDS UK Patient Support Group, Tony Gavin the Director of Campaigning and Advocacy for Leukaemia CARE said, “Denying this innovative treatment to MDS patients and those progressing to acute myeloid leukaemia, will sentence them to a poorer quality of life and an earlier than necessary death. There is no effective existing therapy available currently, and to deny patients this innovative new treatment for MDS is unacceptable. Further to a review of the economic and cost-effectiveness criteria, the SMC must give increased consideration to quality of life issues in appraising treatments for rarer diseases.”
The MDS UK Patient Group announced last month that it is appealing jointly with the Rarer Cancer Forum and the Leukaemia Society against the negative recommendation on azacitidine issued in early March by the National Institute for Health and Clinical Excellence (NICE). Celgene Ltd, the manufacturer of Vidaza (azacitidine), the Royal College of Pathologists and the British Society for Haematology are also appealing and the National Cancer Research Institute Haematological Oncology Clinical Studies Group and the Royal College of Physicians’ Medical Oncology Joint Special Committee have lodged a joint appeal against the NICE guidance.