NOTE - this page is for information only

the campaign ran in 2010-2011

Summary of our NICE appeal Campaign

In 2010 we ran a campaign to convince NICE to recommend azacitidine - and appealed to everyone to help.  We also ran a petition - delivered to the Prime Minister at N0 10.

Our work - together with the other stake holders in this appraisal resulted in azacitidine being recommended by NICE.

Here is the background and history of the work we did:

On Thursday 4th March 2010, NICE published their final decision not to recommend the use of azacitidine (Vidaza) to treat patients with MDS in the NHS.

This negative recommendation was made despite azacitidine being proven to extend patient survival and significantly improve the quality of life of patients through fewer hospitalizations, blood transfusions, and invasive procedures needed to control symptoms of the disease.

However, despite applying special consideration to azacitidine as a treatment that is proven to extend life at the end of life, the committee concluded that “azacitidine would not be a cost effective use of NHS resources.”

The full text of NICE’s Final Appraisal Document on the use of Azacitidine for the treatment of myelodysplastic syndromes can be found here.

MDS UK ARE APPEALING NICE’S DECISION

NOT TO RECOMMEND AZACITIDINE

MDS UK are appealing NICE’s decision. We feel that they did not consider all the evidence available to them on quality of life, do not understand the diseases in hand and the therapies that are currently used to treat them and are denying eligible patients their human rights by taking away the one licensed treatment that can extend their lives.

Most crucially, NICE’s decision not to recommend azacitidine for patients with these blood disorders effectively robs them of an average 9.5 months additional survival and prevents clinicians from providing the best care available. This is unacceptable.

We have submitted our appeal to NICE and been granted a hearing on the 1st June 2010. In the lead up to the appeal hearing we are asking MDS patients, their families and carers, clinicians and nurses to join our campaign to have NICE’s decision overturned.

The Appeal Hearing will take place on Tuesday 1st June 2010. We urgently need your help and testimony to highlight to the Department of Health and NICE the impact that negative guidance will have on patients and families affected by MDS.

How can you help?

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