Debate contribution: Rare Cancers Bill: Legislative Consent Motion

Debate contribution by Mr Alan Robinson on 30 June 2025.

MLA

Mr Alan Robinson

Party at the time

Democratic Unionist Party

Date

30 June 2025

Type

Debate contribution

Business

Executive Committee Business

Heading

Rare Cancers Bill: Legislative Consent Motion

Assembly identifier

Official Report component 5043645

Read the official Assembly record

Text

I support the LCM on the extension to Northern Ireland of clause 1 of the Rare Cancers Bill, which proposes a mandated review by the Secretary of State for Health and Social Care of how the current framework of marketing authorisations and regulatory incentives either helps or hinders the development of drugs for rare cancers. The lives affected by rare cancers are just as valuable and are just as deserving of and entitled to support as any other, even though those cancers affect smaller numbers of people. Whilst those numbers may be smaller, they amount to almost one quarter of cancers in the Province, including blood cancers and head and neck cancers. The Bill will place a legal duty on the Secretary of State for Health and Social Care to conduct a thorough review of UK law governing the marketing authorisations for orphan drug products used in the diagnosis, prevention or treatment of cancer and to compare the UK's framework with regulatory systems in other countries, assessing whether the current rules encourage research into and investment in such cancers. Some companies are reluctant to invest in such research because of the limited numbers of people affected. The fact that potentially life-saving treatments do not receive the same level of research and investment means that there are fewer treatment options for those with rare cancers. Orphan drugs are used to treat not only rare cancers but other rare diseases. The Health Committee understands that some existing non-cancer drugs may be effective for rare cancers, but there is no clear pathway or funding structure to support their investigation and approval. There is a public need to fill that research gap. As was said previously, clause 1 of the Rare Cancers Bill will place a duty on the Secretary of State for Health and Social Care to:

"carry out a review of the law relating to marketing authorisations for orphan medicinal products that are for the diagnosis, prevention or treatment of cancer".

Clause 1(2) provides that the review must consider regulatory approaches in other countries compared with the UK's approach and encourages that the review must assess international regulatory approaches for orphan drug products, with a view to assessing whether the regulations in the UK are considered effective at encouraging research and development for treatments of rare cancers. Patients in Northern Ireland deserve the same access to progress in medical science as those in the rest of the UK because, as we all know, cancer does not recognise borders and nor should the research and innovation that combat it. Any reform as a result of the review of such drugs should be extended to Northern Ireland in the context of the Windsor framework and should build on the existing agreement reached with the EU, ensuring that patients in Northern Ireland see benefit. I support the motion.

473 words. Text as published by the Northern Ireland Assembly.

Assessment

Not flagged

Jev’s structured answers

Assessed 21 October 2026 at 13:06 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

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