Edinburgh MP Scott Arthur reveals details of Rare Cancers Bill he will present in Westminster

The Bill will be debated in the House of Commons on March 14 for up to five hours. The Government could accept the Bill as it stands, agree to incorporate the proposals into other planned legislation or the Bill could fall.

A “rare cancer” is a type of cancer that affects less than six in 100,000 people. They are often very complex types of tumours and are amongst the deadliest cancers.

Scott Arthur’s Bill will be debated in the Commons on March 14 | parliament

But at present there’s no incentive for companies to run clinical trials for treatment of rare cancers due to the low patient population per cancer type, even though taken together rare cancers make up 24 per cent of all cancer diagnoses.

Scott Arthur, who was elected Labour MP for Edinburgh South West at last year's general election, won a top seven place in a ballot for Private Member's Bills, which allowed him to bring forward a new law with a guarantee his Bill will be debated.

Dr Arthur has worked closely with cancer charities in drawing up his proposed legislation.

The Rare Cancers Bill would introduce new measures to encourage companies to invest in clinical trials in the UK for treatment of rare cancers.

Dr Arthur said: "It would place a duty on the Government to appoint a named person to provide leadership and advice for the delivery of rare cancer research. That would mean we could start asking questions in parliament - every six months we could ask the minister what progress has been made.

Scott Arthur, centre, with cancer charity representatives at Westminster | supplied

"When it come to trials, at the moment there's a range of databases which trials are recorded on, but it's difficult for people to find them, so the idea is to put them all on a single database.

"And a big barrier to bringing trials to the UK is that it can be difficult for the pharmaceutical companies to find people with the conditions so they can treat them. So there would be a second database which patients would go into and that would mean a pharmaceutical company wanting to run a trial of a new drug would have ready access to people they could build their trial cohort around."

And the Bill would also instigate a review of how the UK can learn from other countries to attract researchers to run trials here.

Dr Arthur said: "There is a piece of legislation in Europe which means if you bring forward a drug for adults you get an extension of your patent if you trial it with children.

“We want to do the same with cancers, so that if you bring forward a new drug for a particular cancer type you get an extension of your patent if you trial it against a different cancer type, because quite often one cancer drug will work for another cancer.

"But it's tricky because it's European legislation and obviously we're not in the EU anymore. But a review would be set up, which would ask all the right questions and we're hoping the conclusion of that review would be to progress in that way."

Dr Michele Afif, chief executive of The Brain Tumour Charity, said the Bill had the potential to make a significant difference to cancer outcomes for generations.

She said: "For too long rare cancers have been at a systematic disadvantage, not attracting the funding and prioritisation that they need, and the survival gap between them and the more common cancers continues to increase. This must change.

“We are immensely grateful for Scott proposing the Rare Cancers Bill. This will lead to a step change in the approach to rare cancers.”