4 July 2008
Largest genetic killer in UK Duchenne Muscular Dystrophy does not qualify for specific ‘ring fenced’ funding from Government to find a cure – according to recent Parliamentary debate
2,500 paralysed children and young people expected to travel for up to three or four hours to receive life preserving specialist treatment
Funding for Duchenne Muscular Dystrophy, a severe muscle wasting disease that affects boys and young men, was discussed in Parliament this week. Nigel Evans, MP for Ribble Valley, raised the issue of ‘ring-fenced’ funding for research into treatments and a cure for Dunchenne Muscular Dystrophy and called for more localised specialist care for boys and young men living with the condition. Currently there are only specialist clinics in London and Newcastle, causing the many patients in England to travel for three to four hours to receive treatment. There are no specialist clinics in Northern Ireland, Wales or Scotland.
Minister for Health Dawn Primarolo said that the Government policy is not to ‘ring-fence’ funding for specific diseases. However, the well documented example of funding granted to the Motor Neuron Disease Association shows that this is not always the case. In response to the request for further localised specialist care and treatment, Dawn Primarolo stated that 60,000 people suffering from all neuro muscular wasting diseases including Duchenne are not enough to warrant additional services.
Nigel Evans explained that Duchenne Muscular Dystrophy is the largest genetic killer in the UK with 100 boys and young men dying from the condition each year. When diagnosed, parents are often told that there is no cure. In 2007 121 children were killed on the roads, but we would not tell their parents that there was nothing we could do. Huge amounts of funding are made available to educate both drivers and children in the dangers and for equipment to enforce road safety.
In 2007 the Prime Minister’s office stated: “The Government fully accepts that everything possible needs to be done to bring an end to the tragic impact Duchenne Muscular Dystrophy has on individuals and their families.” This statement has been a major recognition from the government that much more needs to be done. Through the work of Action Duchenne the government had provided £2.2 m of funding for the gene therapy MDEX project. So it has been a great disappointment that parents had received a letter from Dawn Primarolo Minister for Health stating: “The £2.2 million granted to the project represents a significant and appropriate investment in view of the fact that the research is still at an early stage and there are competing demands for resources. We are therefore not in a position to commit further funding at this time”
Nick Catlin, CEO of Action Duchenne said, “We are disappointed with the response from the Minister for Health, however, Action Duchenne will continue to fight for ‘ring-fenced’ funding that has been won by organisations like the Motor Neuron Disease Association and to gain new centres of excellence to treat all young people with Duchenne.”
Notes to Editors
About Duchenne Muscular Dystrophy
Duchenne Muscular Dystrophy has no cure. It is a severe muscle wasting disease that affects boys and young men, resulting in boys being in a wheelchair by aged 10 and without treatment, dying in their late teens or early twenties. Duchenne affects 2,500 people in the UK and about 40,000 people worldwide. The gene that causes Duchenne was discovered in 1986, and yet since then the Government has provided only £2.2m of funding for research and clinical trials for treatments and a cure.
About Action Duchenne
Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing £800,000 and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.
Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.
In 2005 Action Duchenne launched the Duchenne Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials.
In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.
For more information please visit: www.actionduchenne.org
Nick Catlin CEO, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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