a day ago
Revolutionary MND drug should be given to all who need it
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. In doing so, he helped to raise millions of pounds for research to help us towards a cure.
Sadly, an effective treatment for this horrific disease didn't come in time for Rob. And a year on from his death, the same is still true for the vast majority of people with MND. But for the one in every 50 whose disease is caused by a particular genetic change, there is now a treatment that works. It's called tofersen, and it dramatically slows, even pauses, the progression of MND. It means that people taking it can now dare to dream and hope for many years of life.
Tofersen has already been approved in the US and the EU, and in the UK is part of the way through the NHS approval process. While we wait for a decision, the company behind it, Biogen, is giving it for free to people who need it. This is a lifeline. People with MND simply don't have time to wait.
The good news is that most people who could benefit from tofersen are now getting it. But shockingly, a small number — the MND Association estimates there are about 12 — have been told that their local NHS won't give it to them, even though the drug is free. The reason? They say they don't have the staff and bed space needed to administer it once a month.
The MND Association has asked the government to intervene. But the government says it is down to individual NHS bodies, and so it can't get involved. This means that if you happen to be in an area where the local NHS will give you the drug, you get to live. If you don't, your condition will continue to deteriorate.
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.
I was deeply touched by Keir Starmer calling those who carry on the fight for a cure for MND in Rob's memory as 'the best of our country'. He's right. They are. But when I think about the best of our country, I think about compassion and a sense of fairness. I'm asking the prime minister to act today to stop other families going through what I've gone through. He can tell the NHS to give everyone who could benefit from tofersen equal access to it. He should do so.
Sign the Motor Neurone Disease Association's petition at
