Rare Cancers Bill

Charlie Maynard Excerpts

Friday 14th March 2025 Commons Chamber

[Charlie Maynard (Witney) (LD)]

I thank the hon. Members for Edinburgh South West (Dr Arthur), for Mitcham and Morden (Dame Siobhain McDonagh) and for Birmingham Erdington (Paulette Hamilton), because I have enjoyed working with them on the Bill. We all have our own stories. I should state my personal interest. My sister Georgie is sitting in the Gallery. She was diagnosed with a GBM—glioblastoma multiforme—nearly two years ago. I would like to say that she is alive and well, but let me just say that she is alive and she is doing well. She has been brave, determined and an inspiration to us all. It is particularly painful as she is a mother of three, a wife, a daughter and a sister. We have a lot to focus on, and it is on us collectively.

I will not rehash too much, and I will try to resist having a cry-fest, but it might be difficult. Our actions, and what we do as a team, are what we will be judged on. I am going to throw it over to the Labour side a little, because they are in government now and they have more power than we do in opposition. When we leave the Chamber today, I ask each Government MP to ask, “Okay, what are we actually going to do?” The talk in this Chamber is nice, but it is the actions that count.

I will pick up on two points. The first is the trial register. We have first-hand experience with Georgie of trying to find what trials are out there. Obviously, there are not enough trials; we know that, and that is something we need to fix. Also, matching patients with trials is not rocket science—that is a basic thing. I would also encourage the Government, rather than just starting from scratch and taking months to reinvent the wheel, to find out what is going on in the private sector and what trials and registers of people seeking trials are already out there, and to build on that. If there is a partnership with some company, that is fine, but let us move quickly, because speed really counts.

The second point is about orphan drug regulations. A key trigger for me getting into politics was Brexit. I thought it was a disastrous idea, and I still do. I struggle to find any possible gains from Brexit, but there is one thing that we could do. The EU has regulations on orphan drugs; ours could be more generous. We could pull research into the UK by giving patents for a few extra years, which would encourage people to dig into the research in these critical areas. I live in hope of that one potential gain.

Even if products are obtained, reimbursement has to be accessible on the NHS, which is far from certain. Ensuring that there is a robust, timely and accessible route to making these drugs available on the NHS for patients really counts. It is critical that that does not fall off the radar. Also, we are really falling behind in the number of clinical researchers active in the UK today. If we want to get this research moving, we must think about what we are doing to get clinical researchers working hard in this space and in others, because we are not doing a good enough job on that.

That is all I will say. Let me just return to my first point: we need action. It is good to have those in the Gallery here today.