Brain Tumours: Research and Treatment

Christine Jardine Excerpts

Thursday 8th May 2025 Commons Chamber

[Christine Jardine (Edinburgh West) (LD)]

I pay tribute to the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh). This is a debate that I wish we were not at. I wish there was no need for us to have this debate, but sadly there is. This is an issue that I have come to know more about personally in the last few months, after a young constituent came to me. Archie is a 22-year-old elite athlete from Edinburgh, training for the Commonwealth games and the Olympic trials. He was diagnosed with an inoperable and terminal IDH-mutant low-grade glioma—a rare form of brain tumour that disproportionately affects younger people. As I say, he is 22 years old.

However, there should be good news, because there is a new highly promising drug—so promising, I am told, that the trials were stopped midway through, and those on the placebo were given the drug, because it was proving so successful in inhibiting the growth of the tumour. It was developed in Edinburgh and is available to eligible patients through a named patient programme, through which it is being administered free of charge, but not everywhere—only, in Scotland, in the NHS Greater Glasgow and Clyde and NHS Tayside areas.

However, Archie has not been given access to the drug because of the routine blood-testing and the cost to NHS Lothian. I and his MSP have written to NHS Scotland and the Lothian health board, and I have written to the drug company, to ask how we can make the drug available. It seems the cruellest of things that a drug is available, having been partly developed in Archie’s own city, but he cannot have it. I know that the NHS is devolved, but drug policy is not. It seems unfair that we live with a situation in which lifesaving treatments are decided by postcode. People are passed from pillar to post only to be told that they cannot or will not have treatments that are available, and that the only options are radiotherapy, chemotherapy and the other interventions that the hon. Member for Mitcham and Morden described, which could be replaced.

One word covers a lot of the excuses that we have been given: affordability—as if we are dealing with anything other than a human being whose situation is no fault of their own. I understand the pressures on finances, on resources and on the NHS—we all do—but that cannot mean a limit to our ambition in what we can do for those who are suffering. We are all here because we believe that we can make a difference. I certainly did not come here with the intention of sitting back and accepting that I could not help when it comes to health or that we would talk about saving money when we should talk about saving lives.

I count myself lucky to have met so many dedicated and strong people since I was invited into Archie’s home to talk with him and his family about the challenges they face and how we could help them. One of those people is Dawn from the Astro Brain Tumour Fund, whose son Shay was diagnosed with a grade 2 IDH-mutant astrocytoma. He said:

“Chemotherapy and radiotherapy. That’s what the future holds for me. After battling through an awake brain surgery, months of rehabilitation, waking up every day battling this disease in my own head, putting a smile on my face for those around me, just to have to go through another year of turmoil and appointments, only to be left with potential long-term cognitive issues and even further away from the 24-year-old I knew on 9 April 2021. That is not a cure.”

It is no longer good enough to say that treatment is too difficult or expensive. Families are crowdfunding for treatment and looking abroad. This is not the NHS that Bevan envisaged; it is not the NHS that any of us wants. We are letting people down if we do not do as the hon. Member for Mitcham and Morden suggested by testing such drugs on everyone and making them available everywhere. When such a drug comes up and can save people’s lives, surely we should ensure that it is available throughout the country, without geographical limits.