Life-saving research in rare cancers would be encouraged under a proposed law aiming to improve access to clinical trials in the UK, according to a Labour MP.
Scott Arthur said his Rare Cancers Bill aims to ensure those with rare cancers are not left behind, with the creation of a database for clinical trials and patient data.
Rare cancers are complex, often deadly, tumours which affect less than six in 100,000 people.
Currently, there is a lack of incentive for pharmaceutical companies to research treatments due to the relatively small market for specific drugs.
Mr Arthur argued the “left behind nature of rare and less common cancers is unacceptable, other countries have measures in place to encourage this life-saving research, it’s time the UK does too”.
Speaking to the PA news agency, the MP for Edinburgh South West said: “If you’re trying to improve cancer survivability, it’s inevitable that you focus on the bigger cancers, because that’s where the gains can be made.
“But the 24% of people who are getting diagnosed with these rare cancers, they’ve got rights as well, and they’ve got reasonable expectations.”
Mr Arthur said the proposed database could increase patients’ access to clinical trials and researchers’ access to patient populations.
“Hopefully, (the Bill) saves lives, but also improves treatments so people have a better standard of care, life expectancy, and are able to spend more time with their families,” he added.
Mr Arthur’s father-in-law died at the age of 76, a few months after his diagnosis of glioblastoma, the most aggressive form of brain tumour.
Labour MP Scott Arthur (Andrew Milligan/PA)
The MP said: “The tragedy is, when he was diagnosed, he went to the doctor, got his MRI scan, and then he was given the result, and the consultant said ‘there’s nothing we can do’, and then he went home and that was it.”
He added: “We thought he was just unlucky – the way the tumour was, where it was, the size of it – meant that nothing could be done.
“And it wasn’t until I spoke to (Dame Siobhain McDonagh) and she said ‘no, when people get glioblastoma, this is what happens because there’s been no advancement in the treatment for 20 years’, which is completely unacceptable really for such a condition.”
Mr Arthur said he hoped the Bill would pave the way for further legislation on brain tumours.
A review of “orphan drug” regulations, which is the term used to describe medicines which treat rare conditions, is proposed in the Bill.
Mr Arthur said: “The aim of the review is to try and set the ground for Siobhain’s Bill, Margaret’s law. If it is possible, it’ll be a foundation for Siobhain to build on.”
Margaret’s law is named after Baroness Margaret McDonagh, Labour’s first female general secretary, who died of glioblastoma aged 61 in June 2023.
Her sister, Labour MP Dame Siobhain McDonagh, has campaigned for Margaret’s law which aims to encourage the pharmaceutical industry to find a cure for the disease.
Dame Siobhain, MP for Mitcham and Morden, told PA: “Anything that shines a light on the truly terrible… just how poor services are for people who suffer with rare cancers in the UK, is a great thing.
“Of 29 similar nations, we come out 27th. So our performance is truly dreadful in this country.
“We have a health system which, if used properly, could be an extraordinary tool for drug trials and research, particularly in this rare area. And it would also be a great motivator and great journey for growth in our economy, but we don’t use it.”
Labour MP Dame Siobhain McDonagh (Katie Collins/PA)
She added: “The money is in the big cancers – breast cancer, bowel cancer, lung cancer, prostate cancer – we’re seeing some fabulous developments in those cancers almost daily, which is great, good luck to everybody involved.
“But why can’t it be extended to rare cancers? There’s a whole generation of new drugs out there that could be the cure.”
On her sister’s death, Dame Siobhain said: “It was too late for her, but it doesn’t have to be too late for other people, if we get our act together.”
The Bill also proposes to appoint a named rare cancer research specialist in the National Institute for Health and care Research (NIHR), with a new duty placed on the Secretary for Health and Social Care for delivery of rare cancer research.
Mr Arthur said this could provide much-needed focus for rare cancer research.
Director of strategy and external affairs at The Brain Tumour Charity, Cameron Miller, said: “The Brain Tumour Charity is proud to have worked alongside Dr Arthur MP and other cancer charities to help shape this Bill.
“There are many reasons why rare cancers have not seen the progress seen in other cancers. The Rare Cancers Bill represents an opportunity to begin to address some of these factors and close the gap. These include better access to information on clinical trials for patients and a dedicated lead who will drive forward rare cancer research.”
The Rare Cancers Bill will receive a second reading on Friday.