Rare Cancers Bill: HL Bill 124 of 2024–26
The Rare Cancers Bill is intended to incentivise research and investment into rare cancers, which tend to be more difficult to diagnose and treat than common cancers. The bill would require the secretary of state to promote research into rare cancers and to review licencing for medicines which treat rare conditions. It would also create a national speciality lead to promote and advise on research, as well as improved data sharing for contacting potential trial participants.
Approximate read time: 20 minutes
The Rare Cancers Bill aims to incentivise research and investment into the treatment of rare types of cancer. Data from Macmillan Cancer Support suggests that rare cancers collectively account for almost half of cancer diagnoses in the UK each year. Rare cancers are often more difficult to diagnose and treat than common cancers. Smaller, disparate patient groups mean recruiting enough patients for clinical trials can be challenging, and the return on investment for developing treatments is generally lower than it would be for widely used medicines.
Cancer charities have been campaigning in favour of the bill, which they say could lead to more treatment options and improved survival rates.
The bill would:
- require the secretary of state to review the law on market authorisations (product licences) for orphan medicinal products (medicines that treat rare conditions)
- extend the current duties of the secretary of state to facilitate or promote medical research to specify that it must include research into rare cancers
- create the position of a ‘national cancer speciality lead for rare cancers’ to promote and provide advice on research and facilitate collaboration
- enable data disclosures for the purpose of identifying and contacting potential participants for clinical trials into treatments for rare cancers
It is a private member’s bill that was sponsored by Dr Scott Arthur (Labour MP for Edinburgh South West) in the House of Commons. Baroness Elliott of Whitburn Bay (Labour) is sponsoring the bill in the House of Lords.
Explanatory notes and an impact assessment have been provided by the Department of Health and Social Care (DHSC).The bill received cross-party support in the House of Commons.
Image by Nephron, CC BY-SA 3.0, via Wikimedia Commons.