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Trust to appeal against wonder drug refusal
Anna was just 11 when she was diagnosed with the cancer in her right leg
A CHARITY which helps rare bone cancer victims including a Longridge doctor’s daughter is dismayed by a top health group’s refusal to recommend a new wonder drug which could help sufferers.
The Bone Cancer Research Trust - for which Longridge people have helped Dr Steve Griffin raise funds after his daughter Anna was diagnosed with the rare osteosarcoma - says it is immensely disappointed that NICE - the National Institute for Health and Clinical Excellence - is not to recommend mifamurtide for the treatment of osteosarcoma in children, adolescents and young adults, despite the fact that the drug has been shown to increase their chances of surviving.
The Trust is to appeal against the decision, made says NICE because of the drug’s ‘costs and efficacy’ and revealed last Thursday just before Bone Cancer Awareness Week started on Monday, and when the Trust is celebrating the launch of its BRCT website.
Chair of the trustees Mike Francis said “This is a very sad day for patients with osteosarcoma and their families. The BCRT has been fighting for access to this important treatment for over a year, and will appeal the decision.”
Professor Ian Lewis, chair of the Trust’s Scientific Advisory Panel, commented “This decision to deny NHS funding for young patients affected by osteosarcoma is immensely disappointing and. means that a number will not survive who would if they received this drug. It is now available throughout Europe and once again is likely to mean that cancer survival in the UK will be worse than elsewhere.
“Survival rates for osteosarcoma have not improved in the last 20 years and more treatments options are desperately needed. The largest clinical trial ever carried out in osteosarcoma showed that mifamurtide significantly improved overall survival.”
Explaining the NICE decision chief executive Sir Andrew Dillon said “The NHS has finite resources, which means NICE can only recommend treatments that are shown to work better than currently available treatments, taking into account any possible side-effects, and represents good value for money for the NHS for the amount of benefit it offers patients.
“Although the independent advisory committee thought mifamurtide could become a valuable new treatment for osteosarcoma, when used in combination with post-operative chemotherapy, the evidence presented by the manufacturer highlighted substantial uncertainty around the size of the treatment effect relative to standard UK clinical practice. This uncertainty, together with the drug’s exceptionally high cost, meant the committee considered mifamurtide not to be an appropriate use of NHS resources.”
Although Dr Griffin was not available for comment this week on the decision, he is supporting the awareness week and the launch of the new website .
His daughter Anna was just 11 when she was diagnosed with the cancer in her right leg in 2008. She had six courses of chemotherapy, two major operations and spent many weeks in Royal Preston, Manchester Children’s and Birmingham Royal Orthopaedic hospitals, completing her treatment in January last year.
The new website will include a wealth of information which by medical experts, patients and their families to ensure that the information is accurate, meets the needs of bone cancer patients and the language is clear and easy to understand.
Dr Griffin commented in a press rewlease “This is the type of information we would have loved to have had when Anna was first diagnosed with bone cancer. Because it’s so rare, we felt so alone as there weren’t many people who we could talk to. The support network on the website will be brilliant for people with bone cancer and their families, as they can get in contact with people who know what they are going through and understand how they feel.”
The website is also supported by Richard Branson’s daughter Dr Holly Branson, who is to attend the Royal Parks half marathon to raise money to fund more research into bone cancer.
*Osteosarcoma is the most common type of primary bone cancer. It occurs most commonly between the ages of 10-24, often diagnosed late, as the pains associated with it are often attributed to growing pains. It occurs predominantly in children and young adults, with 80% of tumours occurring in the long bones of the arms and legs. In England and Wales there were 445 cases of primary bone cancer registered in 2002, with 279 deaths in 2004. There has been no improvement in survival for people with bone cancer in over 20 years, therefore new effective treatments are urgently needed.
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Wednesday 30 May 2012
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