Last week, I stepped into a Time Machine to visit my MP.
Off I zipped, back to the Victorian age to meet the (in?)famous Sir Jacob Rees-Mogg; everyone’s favourite MP from the 19th century. He just so happens to represent us here in Northeast Somerset.
Before you ask, yes, we do have electricity in the west country. I’d love to say we’re surfing the cutting edge of the 4th Industrial Revolution – but, as I write this, a bloody horse just clopped past my front door, somewhat undermining my point.
Fine. So be it.
Having carefully packed a snuff box into my stovepipe hat, my ruthlessly authoritarian, factory-owning father* and I attended Sir Mogg’s constituency surgery last Friday, armed with a parchment containing two important questions about Motor Neurone Disease (MND).
I’d written to Moggy a few months ago, asking him to join the All Party Parliamentary Group on MND.
He’d written back, suggesting – in a most measured and polite way – that APPGs are sometimes a tiny bit completely useless at achieving anything, but that he’d be happy to present any questions I had directly to the government.
(I’ve since checked out that comment about a APPGs with friends who work government circles and apparently, sadly, it often is the case)
No bother. Questions I had, and answers I wanted.
You see, there are two promising drugs emerging out of recent clinical trails to treat MND and both are paralysed (no pun intended) in giant sticky balls of red tape.
When I say ‘promising drugs’ for MND, I’d like to give some context about how incredibly rare such things are.
You see, almost all clinical trials for MND fail spectacularly.
All over the world, thousands of these trials have taken place over the last 50 years. Up until 2021, only 1 drug had been shown to have any effect at all on MND patients. This is Riluzole, the medication I mentioned in my last post, which offers a tantalising 3 months of extra life on average.
Riluzole was approved in 1996. Since then, it’s been a very long list of “This drug looks promising!” …followed by… “Yippee! It works in mice models!” …followed by… “Oh bugger, everyone’s dead again”. Perhaps God is punishing us for giving MND to squillions of innocent mice.
But Interleukin-2 and Tofersen are bucking the trend.
Interleukin-2 is a diluted version of an immune system drug already available on the NHS for the treatment of kidney cancer. During the MIROCALS trial a few years ago, it purportedly reduced the risk of death by 40% during the trial period, for patients with slow-to-medium progressing MND (like mine). This is a huge result.
The trouble is, we won’t know this for sure until the full trail results are published. It’s been 2 1/2 years since the interim results were released, and we’ve not heard a squeak since then. In which time, approximately 5,000 people with MND in the UK have died. Something has gone horribly wrong within the MIROCALS Consortium or ILTOO Pharma (the company that now owns the trial results), and it urgently needs fixing.
Tofersen is even better. This drug has been proven beyond doubt too slow, stop, and sometimes even reverse the effects of MND in patients who have a hereditary version of the disease. This is utterly wonderful and gobsmacking. For the first time ever, people with MND are actually getting better.
The FDA has already approved it in the States; Canada and the EU look set to follow. Then, in March of this year, NICE effectively torpedoed the idea of Torfersen being made available in the UK.
If I was one of these patients, I’d be absolutely furious. I’m pretty damn furious on their behalf.
So, I raised both these points with Sir Moggalot. In fairness to the man, he listened with great interest and sympathy, and he’s up for the fight. Encouragingly, he has form when it comes to getting these types of drugs approved, having successfully campaigned to overturn a decision by NICE to block the first effective therapy for Battens disease, in 2019.
Only time will tell if his words turn into action. He might not do anything. He might not be able to do anything. And with a general election looming, there’s a chance he won’t even be an MP in two months’ time. But at least he’s keen to help, and at least I tried.
People often ask me what they can do to help.
It’s a wonderful thing to hear and I’m deeply grateful for each one, but “can you come round and mow my lawn?” isn’t usually a practical answer.
However, writing to your MP about this clusterfuck situation regarding Interleukin-2 and Tofersen – now that really would help.
You can find out more about the situation regarding each drug using the links below:
- MND Association – May 2023 update on the MIROCALS trial
- MND Association response to the NICE decision regarding Tofersen
I have to believe we can make a difference. I desperately want to set my Time Machine to 2028, to find that MND is no longer a relentlessly progressive, miserable and ultimately fatal disease.
We did it with AIDS – we do it again, folks!
* – only kidding Daddio, you’re the best and I love you!
Great blog Simon. Have just emailed my MP asking her to support the Moggster in his endeavours. At the very least, if she does ask the him what he has done about it, it might encourage him into doing something (if he hasn’t’t already that is)!
And I’ve just realised I can’t even spell my own surname. Oh well.
And I can’t even get the correction right either!
That’s wonderful, thanks Steve! And always nice to hear from you 3 times 🙂
Great blog, really interesting post. Hope that with the added (sad) front page news of Rob’s death, this continues to get even more attention….