MDS Parliamentary Lobby & Petition

MDS UK and MDS FORUM
Parliamentary Lobby

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

About the Lobby (Download Word document version)
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 patients.

How do I take part?

Before the Lobby...

1. Find out who your MP is through the UK Parliament website by clicking HERE
   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
2. Tailor the template letter to your MP with your own experiences of treating people with MDS and send either by post or by email.
   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.
3. If your MP is not available to meet on 26th October 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.
4. Contact MDS UK to inform them of your attendance at the Lobby by emailing campaign@MDSlobby.com.

After the Lobby...

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.
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.

 

Below is information on the previous petition to support an appeal against the NICE decision NOT to recommend the use of azacitidine for the treatment of MDS

On 4 March 2010, NICE published its final decision not to recommend the use of azacitidine to treat NHS patients experiencing myelodyplastic syndromes, chronic myelomonocytic leukaemia, and acute myeloid leukaemia. That decision was appealed on 1 June 2010 by a number of professional groups, charities and the drug’s manufacturer. We are awaiting the decision of the Appeal Committee, chaired by Sir Michael Rawlins.

Members of the UK 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.

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:
• 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

Thank you