Scott Arthur credits you with helping him settle on rare cancers as the focus of his private members’ bill. Do you recall your persuasion technique?
Yes, I do. I was quite systematic. I have been an MP for 29 years and have never featured in the top 100 in a private members’ bill ballot. So my plan—knowing that the top six to eight ballot winners always get a second reading—was to contact them all. The world and his sister contacts you if you finish high up in the ballot, so I just went methodically down the list, asked to see people for coffee and made the case. I know Scott was considering other issues as well so, yes, I did put pressure on him and I understood he might choose something else.
Clearly there is a personal aspect to your campaigning after losing your sister Margaret to a brain tumour in 2023. What is it that you want to see change?
There has been no improvement in the treatment of glioblastoma for the last 30 years. When Tessa Jowell passed away, the then government agreed to pass £40m to the National Institute for Health Research to promote brain tumour drug trials. Today that money still hasn’t been spent. My determination is to encourage more drug trials because that’s the only thing that is going to see glioblastoma outcomes improve. There’s a nine month life expectancy from diagnosis. I want to see that improved.
Given that diseases like glioblastoma are relatively rare, isn’t it more difficult to get a sizeable drug trial cohort than it would be for a more common cancer?
That’s not my experience. We’ve raised a million pounds in my sister’s memory and we’ve launched our own drug trial at UCL under Dr Paul Mulholland, Margaret’s oncologist and Europe’s leading oncologist in glioblastoma. We’re not asking somebody to invent a drug that doesn’t exist. We believe that there’s a drug out there that can substantially improve outcomes but it’s never been trialled on anybody.
The numbers are not the issue. What we want is to bring people into a trial who have only recently been diagnosed and have had no treatment. The idea is that immunotherapy enhances the body’s own immune system to fight the cancer.
So it’s not about the numbers, it’s about who you have on the trial.
Yes. The problem with recruitment is the nature of standard NHS treatment—surgery, radiotherapy, chemotherapy. After that your system can’t fight anything. I used to think doctors got up every day and wanted to cure people. Now I think some of them get up and just want to do what the rules require. Our medical system is innately conservative, so fearful of trying something different.
In 2023, you introduced a 10-minute rule bill on clinical trials. What happened next?
Nothing really. As you know 10-minute rule bills are there to give you a chance to float some ideas. The good thing about Scott succeeding rather than me is that he’s more pragmatic. He’s negotiated with the department of health to get his Rare Cancers Bill this far. They would have stopped me in my tracks. Because I am so motivated by anger and despair that my wonderful sister is not here, I’m not a person who knows compromise. But private members’ bills by their very nature have to be about compromise.
What has been lost from the bill as a consequence of compromise?
I really wanted to see a mechanism that encouraged commercial trials for glioblastoma specifically and rare cancers more generally. About 10 years ago, the EU introduced a mechanism to encourage paediatric drug trials, whereby the patent on the drug would be extended by six months and the drug companies would make more money in return for financing the trial. That may not be the right mechanism for rare cancers but it is a mechanism that I have seen and it’s worked.
I think so but it would have required an awful lot of work. The bill wouldn’t have had a chance of becoming law this year if it was a government bill because you’d have to challenge so much of the establishment.
What would you like the pharmaceutical companies to do differently?
I want them to work with people like me, or people like Dr Mulholland, to provide their drugs free of charge so we can trial them. I want access to the best immunotherapy drugs that they have on their books. And I want to see the £40m promised by the last government used on drug trials. Rare cancers are not rare—45 per cent of the people who get a cancer get a rare cancer.
Would this be a better piece of legislation if it was solely focused on glioblastoma?
It wouldn’t have got the widescale support that it has. By recognising the whole issue of rare cancers, people are far more aware of differential improvement in outcomes. Scott has done a great job. He’s shone a light on rare cancers. If we can improve the outcomes of any rare cancer, that’s a great thing.
