NICE survey – please take part

NICE, the National Institute for Health and Clinical Excellence is running a survey about their work amongst the general public – and health professionals.  Please do take part – even if you are not familiar with all aspects of their activities.

To complete, here is the link to the short questionnaire that will be available throughout August and September.

And here is further information from NICE, regarding the purpose of the survey:

At NICE, we know that it is important that members of the public know about our guidance, to help them to understand the care and treatment that the best evidence suggests that they should receive.  We also know that there is more work needed to promote understanding and awareness of evidence based guidelines amongst the public, and we are hoping that you will be able to help us to do this.

To help us improve how we do this, NICE is conducting a survey to collect information on what patients and the public think of the way our current guidance is presented. We would be very grateful if you could complete a short questionnaire asking about your knowledge and experience of using our clinical guidelines. The questionnaire is a mixture of multiple choice questions and opportunities to provide more detailed replies.  The survey should continue running throughout August and September.

This survey is part of a larger study, DECIDE, which is a five-year collaborative project funded by the European Commission’s 7^th Framework Programme and is designed to research and improve the way healthcare evidence and recommendations are presented in clinical guidelines.

We would like to collect as many responses as possible to this survey.  I would be very grateful if you could help distribute the link to this survey, by

–          Filling in one of our surveys yourself or

–          Posting the link to a blog or a news feed for your organisation or

–          Sharing the link on your Facebook or Twitter feeds or

–          Sending the link to anyone you think might be interested in the survey.

The newspaper The Independent published a supplement on Blood disorders on the 2nd September (not the 30th Aug as initially planned).

If you have missed it – here is the link to the PDF:

Following our latest Cambridge Forum last Friday, we had 3-4 volunteers interested in meeting up regularly – every 3-4 months – for a mini-forum. Location might be Scotsdales again. If interested – please contact us and I will forward your details to the group.

John and Peter have volunteered to help to lead.

Sophie  – Tel 0207 733 7558

Read the MDS Foundation’s Spring 2011 newsletter by clicking here

London, 12 April 2010 – The MDS UK Patient Support Group today expressed its anger and disappointment at the announcement by the Scottish Medicines Consortium that is not recommending Vidaza (azacitidine) be made available through NHS Scotland to patients with a range of life-threatening bone marrow diseases.
Approximately four in 100,000 people in the UK have myelodysplastic syndrome (MDS), a group of debilitating bone marrow diseases that lead to complications such as recurrent or life-threatening infections or bleeding. Most MDS patients have to rely on frequent blood transfusions to manage anaemia and extreme fatigue. While the average survival of patients with MDS is about twenty months, nearly a third (30%) progress to acute myeloid leukaemia (AML), a very aggressive and resistant form of leukaemia with an average survival period of a few months only.

A study published in The Lancet Oncology demonstrated that the median overall survival for higher-risk MDS patients receiving azacitidine was 24.5 months compared with 15 months for patients receiving conventional care such as supportive care or chemotherapy – a difference of 9.5 months. The study also showed that at two years, the survival rate for patients receiving azacitidine was just over 50%, nearly double that of patients receiving conventional care (26%).

David Hall, Chairman of the MDS UK Patient Support Group and MDS patient said, “We are extremely disappointed that the Scottish Medicines Consortium has rejected the only drug proven to give MDS patients more time and a better quality of life. Azacitidine is the only licensed drug currently available to treat MDS specifically and is available to patients throughout most of the European Union. So while a patient in Romania can have access to the most innovative and effective treatment for MDS, this decision means a patient in Edinburgh or Glasgow will be denied that access.”

In supporting the MDS UK Patient Support Group, Tony Gavin the Director of Campaigning and Advocacy for Leukaemia CARE said, “Denying this innovative treatment to MDS patients and those progressing to acute myeloid leukaemia, will sentence them to a poorer quality of life and an earlier than necessary death. There is no effective existing therapy available currently, and to deny patients this innovative new treatment for MDS is unacceptable. Further to a review of the economic and cost-effectiveness criteria, the SMC must give increased consideration to quality of life issues in appraising treatments for rarer diseases.”

The MDS UK Patient Group announced last month that it is appealing jointly with the Rarer Cancer Forum and the Leukaemia Society against the negative recommendation on azacitidine issued in early March by the National Institute for Health and Clinical Excellence (NICE). Celgene Ltd, the manufacturer of Vidaza (azacitidine), the Royal College of Pathologists and the British Society for Haematology are also appealing and the National Cancer Research Institute Haematological Oncology Clinical Studies Group and the Royal College of Physicians’ Medical Oncology Joint Special Committee have lodged a joint appeal against the NICE guidance.

The doctors have called on the Government’s drugs rationing body to give terminally ill cancer patients the drug azacitidine.

The medication treats rare cancers of the blood and bone marrow.

But the drug, also known as Vidaza, has been turned down by the National Institute for Health and Clinical Excellence (Nice).

The organisation says at a cost of around £45,000 a year the drug is not cost effective.
On average it offers terminally ill patients around an extra nine months of life.

Read the full article at Telegraph.co.uk

London, 26 July 2010 – The MDS UK Patient Support Group has welcomed the decision announced today by the National Institute for Health and Clinical Excellence (NICE) that it will re-appraise the use of Vidaza (azacitidine)in patients with higher-risk myelodysplastic syndrome (MDS)- a group of debilitating bone marrow diseases. Continue reading…

London, 23 March 2010 – The MDS UK Patient Support Group has announced that it has lodged an appeal against the negative recommendation issued earlier this month by the National Institute for Health and Clinical Excellence (NICE) for the use of Vidaza (azacitidine) in patients with higher-risk myelodysplastic syndrome (MDS). The Leukaemia Society and the Rarer Cancers Forum are also appealing the NICE guidance.

Approximately four in 100,000 people in the UK have MDS, a group of debilitating bone marrow diseases that lead to complications such as recurrent or life-threatening infections or bleeding. Most MDS patients have to rely on frequent blood transfusions to manage anaemia and extreme fatigue. While the average survival of patients with MDS is about twenty months, nearly a third (30%) progress to acute myeloid leukaemia (AML), a very aggressive and resistant form of leukaemia with an average survival period of a few months only.

A study published in The Lancet Oncology demonstrated that the median overall survival for higher-risk MDS patients receiving azacitidine was 24.5 months compared with 15 months for patients receiving conventional care such as supportive care or chemotherapy – a difference of 9.5 months. The study also showed that at two years, the survival rate for patients receiving azacitidine was just over 50%, nearly double that of patients receiving conventional care (26%).

David Hall, Chairman of the MDS UK Patient Support Group and MDS patient said, “The negative recommendation is a return to hopelessness for UK MDS patients who have glimpsed hope in the EU-approval of the first therapy for malignant bone marrow disease that is a significant advance in medical treatment for this condition. The recommendations also create an ethical dilemma for doctors treating this condition. How can it be in the patient’s best interest to deny them an average of an extra nine months of life? Some patients have their lives extended by much longer than the average nine months.

“We believe strongly that the underlying appraisal methodology used by NICE is unfair and lacks transparency. We also believe that the recommendations are perverse as the appraisal committee completely ignored evidence presented to it on quality of life and does not understand the nature of this very rare disease.”

MDS UK considers that a negative recommendation for azacitidine is unreasonable given the 9.5 month average extension to life – more than three times the figure required by NICE’s end-of-life criteria and longer than the extensions to life accepted by NICE in the past – and the very small patient population. There are approximately 700 people with higher risk MDS in the UK and any financial burden on the NHS is unlikely to be significant.

MDS UK believes that NICE ignored available quality of life evidence, in particular by not considering information gathered from more than 1,000 patients worldwide by the international patient body, the MDS Foundation. This patient information provides strong evidence that patients treated with azacitidine have a significantly improved quality of life.

Finally, MDS UK believes NICE has made recommendations that are incompatible with the Human Rights Act 1998- particularly in terms of preventing foreseeable loss of life and discrimination against the elderly and newly-diagnosed patients – as well as the General Medical Council’s code of ethics. Not being able to offer patients azacitidine and the chance of an extra extension to life flies in the face of doctors’ ethical obligations and may lead to negligence claims against the NHS.

The MDS UK Patient Support Group endorses the report released last week (Monday 15 March) by the Rarer Cancers Forum (RCF) which stated that NICE has rejected cancer treatments which could have benefited up to 16,000 patients in spite of its new guidelines for the appraisal of life-extending, end-of-life treatments. The RCF said that the way NICE is interpreting these guidelines is confusing and runs counter to the spirit of the 2008 report from Professor Mike Richards, the Government’s national clinical director for cancer: ‘Improving access to medicines for NHS patients’.

1. The NICE press release announcing the organisation’s Final Appraisal Determination on azacitidine can be found at the NICE website: here
2. Information on Vidaza (azacitidine), which is manufactured by Celgene Ltd, can be found at EMC website: here
3. Published survival data includes: Fenaux P; Mufti GJ; Hellstrom-Lindberg E et al. Efficacy of azacitidine compared with that of conventional care regimens in the treatment of higher-risk myelodysplastic syndromes: a randomised, open-label, phase III study. Lancet Oncol. 2009 Mar;10(3):223-32. Epub 2009 Feb 18.: here
4. The Rarer Cancers Forum report can be found here http://www.rarercancers.org.uk/news/current/exceptionalprog.final.pdf

Media Coverage

Outlet	URL / Headline	Date
BBC News Online	Cancer groups challenge NICE ruling	23 March
Community Newswire	Read the article…	23 March
Daily Mail Online	Read the article…	23 March
Mail on Sunday	Read the article…	28 March
The Pharma Letter	Read the article…	23 March
Scrip	Read the article…	23 March
The Pink Sheet	Read the article…	23 March
Pharmacy Europe	Read the article…	23 March
Pharmajobs	Read the article…
Nursing in Practice	Read the article…	23 March
Nursing Times	Read the article…	23 March
Birmingham Wired	Read the article…	23 March
Pushpi News	Read the article…	23 March
Mizoram Express	Read the article…	23 March
University of Information	Read the article…	23 March
Paper News	Read the article…	23 March
World News	Read the article…	23 March
Sain Sunsite	Read the article…	23 March
HC2D	Read the article…	23 March
Free Republic	Read the article…	23 March
Life Science Dynamics	Read the article…	23 March
Michelmores	Read the article…	23 March
Cancer Support Groups	Read the article…	25 March

For more media coverage please download our file  Press coverage  (Adobe PDF)