Dad of Leeds Rhinos legend Rob Burrow urges Keir Starmer to make ‘revolutionary drug’ available to all MND patients

The father of Leeds Rhinos legend Rob Burrow has penned an open letter urging the Prime Minister to make a “revolutionary MND drug” more readily available.

Geoff Burrow wrote in The Times today (Thursday) that the lack of availability of a medicine called toferson to some MND patients is “grossly unfair”.
Rob Burrow, a former Leeds Rhinos player, died last year following a lengthy struggle with the degenerative disease. Prior to his death, he and his teammate Kevin Sinfield donated millions of dollars for disease-related charities and causes.
In his letter, Geoff writes: “I know all too well the tragic impact of motor neurone disease (MND), a lethal condition that kills one-third of people within a year of diagnosis and more than half within two years.

“My son Rob inspired the nation through the courage he showed in sharing his story of having MND.”

While there is still no “effective treatment for this horrific disease,” he notes that for one out of every 50 people whose disease is caused by a specific genetic abnormality, there is a medicine called toferson that “dramatically slows, even halts, the progression.”

He claims that Toferson is halfway through the NHS clearance procedure, and that while a final decision is being made, the business behind it is providing it for free. However, while the majority of those who could benefit from the treatment are receiving it, the MND Association estimates that approximately 12 people have been advised that their local NHS will not provide it.

Geoff writes, “The reason?” They claim they don’t have the staff or bed space to administer it once a month.

He stated that the MND Association has requested the government to interfere, but they have responded that the choice is up to individual NHS authorities.
He writes, “There’s nothing I wouldn’t have done to save my son, so for some people to know there’s finally a cure – a free one – but not be able to get it is just heartbreaking to think about.

“This is not only heartbreaking, but also extremely unfair. It contradicts the NHS Constitution’s promise to prioritise patient needs over organisational boundaries.”

Geoff concluded his letter by urging Prime Minister Sir Keir Starmer to “act today to prevent other families from going through what I’ve gone through,” adding, “He can tell the NHS to give everyone who could benefit from togerson equal access to it.” “He should do it.”