General information on our campaign’s work

In addition to its role in providing patient support and information, the MDS UK Patient Support Group has an important place in campaigning on behalf of those affected by MDS. In collaboration with professional advisers covering healthcare, the political scene, the media and Government we campaign to ensure that the best possible resources are available to all affected by MDS wherever they are and whatever their circumstances.

The Group has been involved in providing input to the National Institute for Health and Clinical Excellence (NICE) on a number of issues, and has representatives who belong to Patients Involved in NICE (PIN). We also campaign in collaboration with other organisations representing the less common cancers including Cancer52 and the Cancer Campaigning Group. We represented the views of MDS patients at the Britain against Cancer 2009, the annual conference run by the All Party Parliamentary Group on Cancer.

We have regular dialogue with a number of MPs and peers, particularly those with appointments in health or a strong interest in healthcare matters, to keep them informed about MDS and its treatment.

December 2012 - Update

We have revised our Rarer Cancers Toolkit for MP's.

This is a most useful document to share with your MP to explain what MDS is - and what he/she can do to assist and represent you as their constituent at government level:


MP Rarer Cancers Toolkit

Your constituent, their treatment and how you can help. Updated July 2012

Other news:

We are getting ready to work with NICE on the appraisal of Lenalidomide (Revlimid) for the treatment of MDS 5q- for transfusion dependent patients.

This drug is however still being assessed by the EMA (European Medicines Agency) - for its European license.  Outcome will be known some time in early 2013.

MDS UK and several other European MDS support groups have requested to be involved in the EMA appraisal as well - but hawe have yet to receive further communication from the group assessing the drug.

We will post further news as soon as possible.

2010 Campaign Events

The Parliamentary Lobby Day on 26th October 2010 was extremely successful.
Numerous patients were able to speak to their MP’s personally and discuss the issues surrounding MDS, access to treatment, NICE time-lines and the Cancer Drug Fund.

MDS UK also released the results of a survey that found that 2/3 of MPs didn't know what NICE HTA or a QALY was.

John Leech MP was also present to meet with all patients generally and to prepare for the adjournment debate on the following day.

Or you can watch it on the archive of Parliamentary TV.

We also summarized the main points here

MDS UK and MDS FORUM Parliamentary Lobby

4:00pm, Tuesday 26th October 2010 Central Lobby, Houses of Parliament, London, SW1A 0AA

Parliamentary Lobby Day

The debate took place at 4pm on the 27/10/10 – we have a transcript of the full adjournment debate.


About the Lobby

MDS UK and the MDS Forum are organising a Lobby of Parliament to call on MPs to support access to the best available treatment and care for MDS patients.

This gathering of patients, carers, family members and clinicians in Westminster aims to demonstrate to policy makers the strength of feeling in the MDS community treatment access and make MPs aware of the unique challenges of living with the disease.

We will be calling on MPs to contact NICE and the Department of Health to support a swift NICE reappraisal of azacitidine and urge them to give full consideration to all the evidence presented in the evaluation.

Reasons for the Lobby

  • NICE’s appraisal of azacitidine, the only medicine licensed to treat MDS, has now taken 18 months instead of 6, and is still ongoing.
  • Following NICE’s decision to uphold our appeal of their negative recommendation for azacitidine, we now face a reappraisal that could last until March 2011, two years since the process began. As many as 1500 patients will have missed out on a crucial opportunity for treatment, some patients seeing their condition deteriorate severely and their life expectancy reduced significantly.
  • It is vital that NICE undertakes a swift reappraisal of azacitidine and considers all the evidence put to the Appraisal Committee which did not happen during the first evaluation.
  • Measures such as the Cancer Drugs Fund and the emergency £50m fund available from October 2010, while welcomed by MDS UK and the MDS Forum, will not be accessible until NICE has made its final recommendation and even then, patients will have to go through exceptional cases hearings at their PCT and pass the new SHA clinician panel before getting treatment. This is time that MDS patients simply do not have. Furthermore, the regional allocation of the Cancer Drug Fund will lead to a new postcode lottery problem as each case is decided locally, leading to regional inequalities in access.
  • We urge MPs to support a swift and positive appraisal or azacitidine to ensure that MDS patients get access to treatment that can provide them with additional months of quality life at the end of their lives.
What is a Parliamentary Lobby?
  • A Parliamentary Lobby is when constituents to come to Westminster to meet with their MPs and urge them to take action on their behalf.
  • This Lobby will bring MDS patients, carers, clinicians and supporters to meet with their MPs in Parliament and ask them to contact NICE and the Department of Health about access to treatment for MDS patients.
  • Any constituent can come to Central Lobby and ask to see their MP, also known as ‘green carding’ as that is the card that is sent to MP’s offices notifying them of your arrival.
  • Green carded MPs are obliged to come to Central Lobby and greet their constituents. However in the busy world of Westminster, prior diary commitments and House business can mean they are not always available.
  • In order to ensure a meeting it is therefore important to notify your MP in advance of the Lobby so they know you are coming. MDS UK have provided a template letter that you can send to your MP in advance. You can find this in the Patient Lobby Pack on the MDS UK website.
  • After the Lobby, MPs are obliged to make representations to relevant authorities to address the concerns of their constituent and resolve the matter where possible. We have included template letters for your MP to send to NICE and the Department of Health in the Patient Lobby Pack. You can email these to them after the event to make it easy for them to amend and send on.
What we are asking MPs to do?
  • Write to NICE and Department of Health and urge them to pursue a swift reappraisal of azacitidine that considers all the evidence available to them.
  • Send a press release to their local media, informing them of the MDS UK and MDS Forum Lobby, highlighting the reasons for the campaign and demonstrating their support for treatment access for their constituent.
How do I take part ? Before the Lobby

STEP 1 Find out who your MP is through the UK Parliament website by clicking HERE

STEP 2 Download the Patient Lobby Pack which contains:

  1. A template letter to your MP, informing them of the lobby and asking for a meeting HERE
  2. A template letter for your MP to send to the Secretary of State for Health, Andrew Lansley MP HERE
  3. A template letter for your MP to send to the Chairman of NICE, Professor Sir Michael Rawlins HERE

STEP 3 Tailor the template letter to your MP with your own experiences and send either by post or by email.

STEP 4 Your MP should contact you to arrange a time to meet on the Lobby day. If you do not hear back, contact their office via the House of Commons switchboard (0207 219 3000) and ask to speak to their diary secretary.

STEP 5 If your MP is not available to meet on 26th October 2010 you can still ask them to contact the Secretary of State and NICE on your behalf by emailing them the template letters. You can still attend the Lobby, even if you are not meeting your MP, to demonstrate the ground swell of support for the campaign.

STEP 6 Contact MDS UK to inform them of your attendance at the Lobby by emailing Sophie Wintrich at or calling on +44 20 7733 7558.

How do I take part ? After the Lobby

STEP 1 Email your MP with the template letters to the Secretary of State and NICE for them to tailor and send, calling on them to support the swift, positive appraisal of azacitidine.

STEP 2 Email your MP with a template press release [that will be provided following the Lobby] and photo of you with them [taken on the Lobby day] for them to tailor and send to your local newspapers to raise awareness about MDS in your area.


NICE Appraisal of azacitidine (Vidaza) for the treatment of MDS

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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