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. 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?

1. Sign the petition

The azacitidine petition is now closed – thank you to all who helped – we collected 688 signatures.
Together with Donald Facey’s petition for AML, this amounts to over a 1000 people requesting NICE to review their decision regarding this drug.
Check our photos and coverage of the event on our Events page.

Another petition set up by patient Donald Facey for AML and azacitidine has now received a response by the Prime Minister’s office – please see details here. This AML petition collected 525 signatures.

2. Register to Attend the Appeal Hearing

You can show your support for MDS UK’s Appeal in person by registering to attend the Appeal Hearing on 1st June.

Please follow the link to the NICE website here to book a place.

3. Write to NICE and the Secretary of Health

Please write to both NICE and the Secretary of Health in support of the appeal and explain why it is so important that patients with these blood disorders have access to the best treatment available.

Here you can find both template letters to NICE and the Secretary of Health: NICE letter and SoH letter

4. Contact us if you would like to share your personal MDS experience

If you have been denied access to azacitidine recently, please contact us

5. Write to your MP

You can find the template letter to your MP here

6. Tell Your Story

We are also looking for patients to tell their stories about living with MDS and help raise awareness of our campaign in the media, such as this article about our deputy chairman: Mail on Sunday article – Rodney Taylor

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