Memorandum submitted by the Motor Neurone
Disease Association (FC 59)
1. INTRODUCTION
1.1 Few conditions are as devastating as
Motor Neurone Disease (MND). In the majority of cases it is rapidly
progressive, always fatal and kills five people every day in the
UK. It leaves people locked into a failing body, unable to move,
speak or eat normally. The intellect and senses usually remain
unaffected. There are around 5,000 people living with MND in the
UK. Half of people with the disease die within 14 months of diagnosis.
There is no effective treatment, and there is no cure.
1.2 The MND Association (registered charity
number 294354) is the only national organisation supporting people
affected by MND in England, Wales and Northern Ireland, with approximately
90 volunteer-led branches and 3,000 volunteers. The MND Association's
vision is of a World Free of MND. Until that time we will do everything
we can to enable everyone with MND to receive the best care, achieve
the highest quality of life possible and to die with dignity.
1.3 One mission of the MND Association is
to promote research into the causes of MND and effective treatments
for the disease. The Association spends a higher proportion of
its research funding budget on MND than any other organisation
in the United Kingdom. Research funded by the MND Association
is classified as follows:
— to identify the causes of MND;
— to create and validate new disease models;
— to identify disease markers (bio-markers);
— to develop and expert workforce;
— to improve clinical research and care
management;
— to facilitate information flow with leading
research centres around the world; and
— to strengthen our partnership and influencing
activities.
1.4 The MND Association encourages a multidisciplinary
approach to research to:
— attract and support promising young scientists;
— draw in established researchers working
in related fields; and
— assist researchers in accessing large-scale
sources of funding.
2. DECLARATION
OF INTERESTS
2.1 The MND Association currently funds
four research awards (three clinical fellowships and one joint
project grant) in partnership with the Medical Research Council.
These awards support clinicians wishing to pursue scientific research
and aim to strengthen the links between laboratory and clinic.
3. THE IMPACT
OF SET
SPENDING CUTS
ON MND
3.1 The MND Association does not feel it
is in a position to respond to all issues outlined in the call
for evidence. This response will focus on the implications and
effects of SET spending cuts on people living with MND.
3.2 The continued funding of innovative,
world-class research is imperative in the fight against MND.
3.3 It is estimated that the maximum direct
costs to the health and social services for a person with MND
is approximately £200,000 annually, and represents a maximum
cost to health and social services in UK of £373 million
a year in addition to indirect costs to the economy of approximately
£1.1 billion.
3.4 The UK is currently at the forefront
of clinical research into MND, providing clear benefits for patients,
however this position is generally perceived to be under threat
as funding resources decrease and other diseases, such as cancer,
are prioritised over rarer conditions like MND.
3.5 Basic scientific research, which may
be incorrectly regarded as lacking a value-for-money element,
is key to ensuring continued advances into MND research. The MND
Association is seeking to develop a translation research pipeline
to transfer emerging knowledge from the lab to the clinic. A translational
pipeline cannot be established without the continued emergence
of new knowledge and ideas. There is currently insufficient funding
to pursue translational opportunities that arise from basic research.
Any further cuts on SET spending will result in additional missed
opportunities and could hamper future breakthroughs in identifying
the cause and possible treatments for MND.
3.6 Continued funding cuts could result
in researchers leaving the United Kingdom to pursue their research
in other territories where SET funding is less restricted. Likewise,
it may be increasingly difficult for research centres in the United
Kingdom to recruit talented researchers. This situation would
result in the eroding of the United Kingdom's position at the
forefront of scientific and clinical research.
3.7 The MND Association is currently funds
more MND research projects than any other organisation in the
United Kingdom. As a charity, the MND Association is unable to
meet the funding needs for MND research using its own resources.
This will be especially true if the Association is required to
meet funding shortfalls caused by a decrease in SET spending.
Continued and sustainable government funding is imperative to
find the cause and a cure for MND.
4. RECOMMENDATIONS
4.1 The MND Association urges the Select
Committee to consider the detrimental impact of SET spending cuts
on MND research. The field of MND research is moving at a faster
pace than ever before. However, there is currently insufficient
funding to ensure continuing and sustainable world-class research
into the cause, cure and clinical treatments for MND. Further
cuts in SET spending would hamper future research breakthroughs
for this devastating disease at a time when more advances than
ever are being made.
4.2 Any proposed changes to SET research
funding must balance perceived cost-effectiveness with real-terms
value to the United Kingdom's economy. This should include consideration
of the significant social and economic costs to the National Health
Service and other statutory services incurred on behalf of people
living with MND, as well as the economic benefit from the United
Kingdom remaining an international centre of excellence in MND
research.
January 2010
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