Rare cancers bill offers hope to people with incurable brain tumours

The draft Rare Cancers Bill would create a national database to link rare cancer patients to clinical trials, and it is due for a third reading in the House of Lords on Friday.

A draft law aimed at improving research and trial access for rare cancers is being debated in Parliament. The Rare Cancers Bill proposes a national patient database, a national lead for rare cancers, and a review of orphan drug law to help link patients to relevant clinical trials. The Bill was brought forward in the Commons by Labour MP Scott Arthur and has been associated with calls for stronger research and approval pathways. A patient ambassador with an incurable brain tumour has said the proposals give her hope. Key facts: - The Bill would create a database to connect rare cancer patients with clinical trials and establish a national lead on rare cancers. - It would require the Health Secretary to review laws on so-called "orphan" drugs. - The Bill is scheduled for a third reading in the House of Lords on Friday. - Abi Feltham, diagnosed with grade three oligodendroglioma in May 2024 and told she has 15 years to live, said easier access to trials and new drugs gives her hope. Summary: The Bill aims to strengthen research coordination and trial access for rare cancer patients and to review legal measures affecting specialist drug development. If peers approve it on Friday and it receives royal assent, it would become law and could change how patients are linked to trials and how rare-disease drug policy is reviewed.