United to End MND ‘Disappointed’ by No UK Government Funding

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by Mary Chapman |

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The United to End MND campaign in the United Kingdom is “disappointed” the nation’s government did not accept its plea to invest £50 million (about $68 million) in targeted motor neuron disease (MND) research. MNDs are a group of progressive neurological disorders that includes amyotrophic lateral sclerosis, commonly known as ALS.

A £50 million investment over five years would have established a virtual research group to provide the infrastructure needed to accelerate current treatment developments, according to the campaign’s organizing coalition, comprised of the MND AssociationMND Scotland, and the My Name’5 Doddie Foundation.

According to the campaign, the U.K. government’s current funding for targeted investigations is less than £5 million (about $6.8 million) annually, although the government put that figure at around £15 million (more than $20 million).

The United to End MND coalition had sought the funding as part of the U.K. government’s Autumn Budget and Spending Review 2021.

“We are disappointed that our submission to the spending review for a £50 million investment over five years into a virtual MND Translational Research Institute was not accepted,” the MND Association said in a press release on behalf of United to End MND.

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“We believe this would have been the quickest and most efficient way to accelerate the current promising progress that our scientists are making towards the first-ever meaningful treatments for this brutal condition,” the group said. “It would have attracted considerable investment into the U.K. from the major pharmaceutical companies, in line with the government’s ambition for the U.K. to be a ‘scientific superpower.’”

The U.K.’s Medical Research Council (MRC) funds research, grants, and postgraduate study that aims to improve people’s health. The non-departmental public body is funded by the Department for Business, Energy, and Industrial Strategy (BEIS).

Meanwhile, the Department of Health and Social Care (DHSC) is primarily responsible for government policy on health and adult social care. The U.K.’s National Institute for Health Research (NIHR) funds health and care investigations.

“We continue to challenge the government’s considerable overestimation of spending on targeted research for MND via BEIS/MRC and DHSC/NIHR,” the association wrote. “A positive response would have offered hope to thousands in the U.K. who are affected by MND, whether as a patient, family member, or friend.”

The issue, the coalition contends, is that current government funding mechanisms are too fragmented and inefficient to handle current MND research. The coalition said, however, that it is “encouraged” by continued statements made by some high-level government officials that they understand the situation and are looking for resolutions.

“We are calling for an immediate renewed focus on these efforts,” the coalition members said. “We simply cannot wait for the [200,000-plus] people alive in the UK today, yet to be diagnosed, who will die from MND without meaningful treatments and ultimately a cure.”

The institute proposed by United to End MND would have focused on drug discovery and development, developing a sustainable platform for MND trials, and implementing a rigorous clinical research program.

“Our researchers are on the cusp of a breakthrough in discovering treatments for MND, but they need a meaningful injection of funding,” said Sally Light, the MND Association’s CEO, who said she was “so disappointed on behalf of everyone in the MND community” by the U.K. government’s lack of funding.

“We will continue to do what we can as a charity but we will also continue to fight for the investment that will give hope to the 5,000 people in the U.K who are living with [MND] right now,” she said.