In Research
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Ring Fence Duchenne
Nigel pulled no punches in describing the effects that Duchenne has on young people and the impact that it has on families. Nigel quoted our document “Bringing Duchenne research to the clinic” and called for a commitment to further ring fenced funding for research. He also asked if the current centres of excellence for Duchenne in London and Newcastle could be expanded to cover the whole country.
Like many people Nigel was not personally aware of the severity of Duchenne that will lead to severe muscle wasting, paralysis and early death. His speech in the main chamber of the house is a vital step in the process of making all our MP’s and Government officials aware of Duchenne. Nigel quoted to the minister the statement made by the Prime Minister’s office in October 2007
“The Government fully accepts that everything possible needs to be done to bring and 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”
But Dawn Primarolo states in her debate with Nigel Evans that the Government is boosting funding of research through the Department of Health’s funding review of 2007. This will give substantial extra sums for the MRC and NIHR.
“By 2010–11, total Government investment in health research will top £1.7bn. So the funding is there.”
Despite our demand for £30m being only 0.02% of this total budget for one year the government will not ring fence funding, according to Dawn Primarolo, for specific diseases like Duchenne. So it is left for our researchers to join the lottery of applications for various rounds of funding. This is no way to support research and clinical trials. Indeed the MRC itself has recognised this in describing on its website its recent partnership with The Motor Neuron Disease Association.
http://www.mrc.ac.uk/NewsViewsAndEvents/InvolvingThePublic/PublicInvolvementInMedicalResearch/MND/index.htm
“The workshop (organised with their patient group in December 2007) was the beginning of a new initiative aimed at accelerating the pace at which research findings are turned into prevention and therapies for MND. The MND Association and the MRC have pledged an additional £15 million for high-quality research aimed at finding new treatments and cures for this debilitating neurodegenerative condition, Currently, the MRC invests around £3.7 million a year on research related to motor neurone disease. It’s looking to fund at least £7.5 million of new research over the next five years. At least the same amount will be spent on research by the MND Association’s private donors.”
Unless I’m very much mistaken this represents ring fenced funding for a particular disease by the MRC as recently as 2007. This is an example of exactly the type of partnership that we would like to build with the government so why not with Duchenne Dawn?
Dawn Primarolo takes up our argument for centres of excellence.
“Although more than 60,000 people in the UK have a muscular disease or a related condition, that is not a large number compared to the total number who need access to specialist services. It is difficult to see at this time how the level of specialist services that is needed could be provided in every locality.”
So Dawn, 60,000 people some of whom are paralysed by 16 years of age and fighting for every breath at 20, suffering serious heart problems and need constant care and attention do not warrant special services? No wonder this government is struggling for survival and working class voters are currently deserting them in droves if they cannot help some of the neediest and disabled people in our communities.
The solution to providing these specialised services is simple and the government already have blueprints at Great Ormond Street in London and in Newcastle. We need to extend these hubs of multi disciplinary provision to say Belfast, Cardiff, Glasgow, Manchester, Oxford and then the spokes of the wheel of provision can be put in place with additional outreach resources.
The answer is not a few more physiotherapists (however welcome) scattered around the country or the odd occupational therapist here or there. The very nature of Duchenne demands highly trained experts steeped in cutting edge research that can provide the expert medical care required. The success of multi disciplinary teams likes those at GOSH and Newcastle depends upon building expertise over time and being led by a senior professor or clinician. We believe at Action Duchenne that this could be achieved very quickly and these centres can also provide the support for new clinical trials.
Dave Anderson another of our champion MP’s speaking at the debate summed up very movingly our Race Against Time:
“I want to close by returning to the report that the hon. Gentleman mentioned. (Duchenne research into the Clinic Action Duchenne June 2008) It says the system has failed; however, it is not the system but Members in this House who have failed. If we go back to a lobby next June to meet the boys we met a fortnight ago and more of them are no longer there because they have died, we will have failed them again. We must put this right.”
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.
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