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.
A letter by Geoff Burrow has been published in The Times today (Thursday) in which he says that the lack of availability of a drug called toferson to some MND patients is “grossly unfair”.
Former Leeds Rhinos player Rob Burrow died last year after a long battle with the degenerative disease. In the years prior to his death he raised millions for charities and causes associated with the disease alongside former teammate Kevin Sinfield.
In his letter, Geoff says: “I know all too well the devastating impact of motor neurone disease (MND), a fatal disease that kills a 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.”
He notes that while there still isn’t an “effective treatment for this horrific disease”, for one in every 50 whose disease is caused by a particular genetic change there is a drug called toferson that “dramatically slows, even pauses, the progression”.
He says that toferson is part way through the NHS approval process and that while a final decision is being decided on, the company behind it is giving it for free. However, while most who could benefit from the drug are receiving it, the MND Association estimates that there are about 12 people who have been told that their local NHS won’t give it to them.
Geoff writes: “The reason? They say they don’t have the staff and bed space needed to administer it once a month.”
He said that the MND Association has asked the government to intervene but that they have said that the decision is down to individual NHS bodies.
He writes: “There’s nothing I would not have done to save my son, so for some people to know there’s a treatment at long last - a free one - but not to be able to access it is just unbearable to think about.
“Not only is this tragic, but it’s grossly unfair. It goes against the NHS Constitution’s commitment to put the needs of patients before organisational boundaries.”
Geoff finished his letter by calling on the Prime Minister, Sir Keir Starmer, to “act today to stop other families 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 so.”