Rob Burrow: Government has ‘blood on its hands’ over £50m MND research delay

“People with MND don’t have the luxury of time. It’s as if there is no rush to give our scientific researchers the opportunity to find an effective treatment while six people die each day from MND. There is blood on your hands, this Government and the civil servants” – Rob Burrrow

Rob Burrow says the Government has “blood on its hands” over the delay in delivering on a promise to provide £50m towards efforts to find a cure for motor neurone disease.

The former Leeds and Great Britain player, 39, has become a leading light in the campaign to raise awareness of MND, having been diagnosed with the terminal illness in December 2019.

The Government pledged last November to make £50m available to the Motor Neurone Disease Association as part of a £375m investment into neurodegenerative disease research but, eight months on, scientists have yet to see the money, leaving Burrow frustrated and angry.

“I have 100 things to say to this Government but I will keep it to one,” Burrow told the PA news agency.

“People with MND don’t have the luxury of time to wait. It is as if there is no rush to give our scientific researchers the opportunity to join the race to find an effective treatment while six people die each day from motor neurone disease.

“There is blood on your hands, this Government and the civil servants, with the red tape you are putting up.”

Burrow, 39, was diagnosed with the terminal illness in December 2019

Burrow’s stance is supported by his wife and full-time carer Lindsey, who said: “I am hopeful that one day a cure will be found, but we need the UK Government to support people with MND and provide more funding for research into the disease.

“In September 2021, the Prime Minister and Health Secretary pledged £50m for research but no money has been received by the MND researchers yet.

“A third of people with MND die within a year of diagnosis and don’t have time to wait.”

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The Burrow family spoke about their charity work and the shirts they designed for Leeds Rhinos’ Magic Weekend fixture earlier this month against Castleford Tigers

A Department of Health and Social Care spokesperson told PA: “We have invested millions of pounds into motor neurone disease research – leading to major advances in how the disease is understood.

“For example the funding has supported clinical trials of a repurposed drug, Triumeq, which has shown promise at reducing a type of virus in the brain thought to kill motor neurons.

“We remain committed to spending at least another £50m to help find a cure and researchers can apply for funding at the National Institute for Health and Care Research and UK Research and Innovation.”

Burrow, who was given two years to live at the time of his diagnosis, says his condition has not worsened since he started taking an immunotherapy drug used in clinical trials for various types of cancer.

“I’ve been using proluekin in the form of IL-2,” he said. “I’ve been on this drug for almost two years and I have not got any worse since I have been on this cancer drug.”

Burrow has provided an update on his battle with MND in a new chapter of his autobiography, ‘Too Many Reasons to Live’, which is now out in paperback, and has maintained his famous sense of humour despite being confined to a wheelchair and being able only to speak with the aid of voice technology.

“I’ve been this way for 18 months now and I have got used to being like this,” he said. “I have been a professional box-set watcher.”

With close friend Kevin Sinfield, the former Leeds and England captain, Burrow recently completed the Leeds 10k in a specially adapted wheelchair to raise money for the Leeds Rhinos Foundation and the Rob Burrow Centre for MND.