Edinburgh MP Scott Arthur's Rare Cancers Bill backed by father of 4-year-old girl who died from neuroblastoma

Jonathan Anderson, headmaster at Edinburgh’s Merchiston Castle school, said only a tiny fraction of the money raised for cancer research was currently devoted to cancers like neuroblastoma, which claimed the life of his daughter Tilly in 2022.

Edinburgh South West Labour MP Scott Arthur has brought forward a Rare Cancers Bill which could incentivise pharmaceutical companies to trial existing cancer drugs as treatments for rare cancers.

Tilly Anderson died, aged 4, with neuroblastoma in 2022 | supplied

And Mr Anderson will be in the gallery at the House of Commons as MPs debate the Bill on Friday, the day after what would have been Tilly's seventh birthday.

He said: “It's great to see the survivability rates for the better-known cancers rising, but when it comes to slicing up the cancer research fund, rare cancers don’t get the same support. Less than a quarter of one per cent will make its way to a cancer like neuroblastoma. Of the 100 or so kids that got neuroblastoma diagnoses the same year as Tilly, 50 will now be dead.”

Tilly first became ill in 2021, when she was three, but it was impossible to get a face-to-face GP appointment and her parnts took her to A&E, where a doctor said she most likely had a viral infection and gave them ibuprofen. Her symptoms appeared to subside, but then returned. Tilly was taken back to A&E and after various tests was transferred to a cancer ward. She was diagnosed with Stage 4 neuroblastoma and given a 50/50 chance of survival. She had chemotherapy and surgery, but the tumour returned aggressively and Tilly died in September 2022.

Mr Anderson said: “Anything that can be done to improve the way research is conducted, supported, co-ordinated and shared I'm absolutely all for. I believe the Bill could give people who find themselves in the same situation as Tilly a better chance in future.”

Dr Arthur’s Bill has support from MPs across the political spectrum and is backed by 35 charities. He was able to propose the law change after winning a top slot in the ballot for introducing private member's bills at Westminster. If it passes when MPs vote on its crucial Second Reading on Friday, the Bill has a reasonable chance of making it to the statute book.

Rare cancers are defined a those that affect less than six in 100,000 people. But although they are individually rare, together they make up around 25 per cent of all cancer diagnoses in the UK and collectively they are often more complex and deadly than more common cancers.

But the relatively small market for specific drugs to treat them means little research is carried out and treatments for these deadly diseases are being left behind, with many cancers having no new treatments for decades.

Dr Arthur said: “Almost everyone knows someone who has been affected by one of these diseases. My Bill lays the foundations to take the fight to rare cancers and end the delay in researching treatments to these cruel diseases.”

The Bill would require the UK Government to appoint a named person to provide leadership and advice for the delivery of rare cancer research.

It would create a single UK database for clinical trials and patient data on an opt-out basis, giving patients increased access to trials and giving researchers easier access to relevant patients.

And it would initiate a review of “orphan drug” regulations which could incentivise companies to trial existing cancer drugs for treating rare cancers, encouraging life-saving treatments to be trialled in the UK.

Dr Arthur said: “Charities feel that rare cancers are being completely overlooked because to hit their cancer targets governments have focused on the bigger cancers like lung cancer and not enough resources have been going to develop treatments for the rarer cancers or even to ensure GPs are equipped to diagnose these tumours early.

“What I think this Bill is going to do is make it much more likely that trials are run in the UK and people here benefit from those advances. And I hope that over time the chances for other people in Tilly's position will become better and better.”