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Invitation to share your MDS story

Invitation to share your MDS story with this new project: Life beyond Limits.
Please check the website – we hope you can help raise awareness of MDS via this work.

 


The Independent Supplement

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:



Cambridge Regional Group – join!

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


Latest Newsletter

The latest newsletter is now ready to view on the information material page here.


Spring 2011 Newsletter

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


Bone marrow patient support group angered and disappointed by SMC final decision on Vidaza

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.


Need for Azacitidine featured in Daily Telegraph

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


Patient support group welcomes NICE decision to re-appraise Vidaza

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…


Cancer patient support groups to appeal negative NICE decision

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)


Times article on use of the Interim Cancer Drug Fund

Only 200 patients helped by £50m fund for extra cancer drugs

Only a tiny proportion of the Government’s interim fund for cancer drugs has been claimed, almost a third of the way through its six-month lifespan, The Times has discovered.

The £50 million emergency fund for drugs not approved by the NHS watchdog has been used for only 200 patients, with doctors finding the application process bureaucratic and confusing.

Wide regional variations also emerge from figures obtained by The Times from regional strategic health authorities, with experts warning of a return to a “postcode lottery”. For example, while the NHS in the West Midlands has paid out £500,000 from the fund on 22 patients, in the South Central region only £38,000 has been spent on ten patients.

The fund allows doctors to pay for expensive cancer drugs that have not been deemed cost-effective by the National Institute for Health and Clinical Excellence.

Before the general election David Cameron promised a £200-million-a-year cancer drugs fund to allow these drugs to be prescribed on the NHS. The interim £50 million, which opened in October, will be available until the main fund begins in the spring. However, figures compiled from England’s ten NHS regions show that only about 200 people have been treated under the scheme nationwide, a tenth of independent projections, while in Yorkshire the number of applications is in single figures.

About £2 million, 4 per cent of the total, has been spent in the five regions which revealed spending figures. The remaining regions have had similar numbers of applications, suggesting that well under 10 per cent of the £50 million has been claimed.

Experts said that many doctors did not understand how to access the scheme, while others did not want to use it. A survey of hundreds of oncologists carried out by Professor Lesley Fallowfield of the Univeristy of Sussex said: “Many of the doctors had no idea what the policy of their trust was. Many doctors are still uncertain because it’s somewhat ambiguous as to what the process is.”

Different areas have the power to allow different drugs, with Avastin, a cancer drug rejected by Nice, automatically available under the fund in some parts of the country, but not in others.

Professor Fallowfield, a psychologist who studies how cancer is treated, said: “The process to access this fund is still unclear and my anxiety generally is that panels in different SHAs are making their own idiosyncratic decisions.”

She said there was a danger that those who “shout the loudest” could get treatment, not those who need it most.

Doctors also felt that they should put their responsibility to the wider NHS ahead of individual patients, the survey found, meaning that they often did not want to apply for unapproved drugs.

“Many doctors were thinking ‘I’m not sure that NICE hasn’t made the right call’,” Professor Fallowfield said.

A spokesman for the Department of Health said it was monitoring applications and would assess the fund in April.

COST AND EFFECT

Avastin (Bevacizumab) In advanced bowel cancer, can prolong life by six weeks on average, but NICE ruled £21,000 per patient was not cost effective.

Azacitidine In rare cancers of the blood and bone marrow, shown to extend life by nine months on average, but NICE provisionally ruled that £45,000 a head was too much.

Imatinib Used on chronic myeloid leukaemia and intestinal tumours, but NICE said there was not enough evidence to justify £19,500 per patient to give it to people whose tumours had been removed.

Temsirolimus (Torisel) Not approved for patients with kidney cancer.

Source: The Times – 22/11/2010


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