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 20 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.”