MDS Petition

NICE: Preliminary decision NOT to recommend the use of azacitidine for the treatment of MDS
On 3rd August 2009, NICE published their preliminary decision not to recommend the use of azacitidine to treat NHS patients experiencing myelodyplastic syndromes, chronic myelomonocytic leukaemia, and acute myeloid leukaemia.

Members of the MDS Forum, who strive to ensure all of our patients receive the best possible care, have treated people with azacitidine and consider it to be a very valuable resource. We have even treated 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 be impossible to continue this groundbreaking research here in the UK.

Azacitidine has been available for use in Europe since October 2008, and is widely used across the EU, with the UK being one of the few exceptions. It has been available in the USA since 2004. To restrict access to this treatment risks putting us even further behind other countries in the care we can offer for cancer and will also make it impossible to carry out further trials in this area in the UK.

The decision not to recommend this treatment was made despite azacitidine being proven to extend patient survival for an additional 9.2 months and significantly improve the quality of life of patients through fewer hospitalizations, blood transfusions, and invasive procedures needed to control symptoms of the disease.

NICE will next meet again to discuss this subject on 3 September 2009.

How you can help
We need to raise awareness as to how crucial this treatment is for so many people and the proven health benefits. There are a number of actions you can take to help ensure this treatment is available for the people who need it, including:

• Signing up to the MDS Forum petition (below) calling on the Prime Minister to ensure people experiencing MDS receive the standard of care common throughout Europe
• Pass on information (or write articles yourself) to journalists or other people who may be interested to hear about your concerns
• Contact your local MP (you can find out who they are here) to let them know your concerns
• Write to NICE and the Secretary of State for Health to let them know your concerns
• Tell your friends and family about our campaign and send them the internet link to our petition

We the undersigned petition the Prime Minister to ensure that people experiencing MDS receive care comparative with that available in most other European countries.

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