Overview

The Rare Cancers Bill aims to boost research and investment in treatments for rare cancers. It mandates a review of marketing authorisations for relevant medicines, establishes new duties for the Secretary of State to promote research, and facilitates the disclosure of patient information for research purposes, all while adhering to data protection laws.

Description

This bill comprises several key actions:

• Review of Marketing Authorisations: The Secretary of State must review the laws governing marketing authorisations for orphan medicinal products used to diagnose, prevent, or treat cancer. A report detailing the review's findings must be published within three years and presented to Parliament. The review will consider international regulatory approaches.
• Secretary of State's Research Duties: The bill expands the Secretary of State's existing research facilitation duties under the National Health Service Act 2006 to specifically include research into rare cancers (defined as affecting no more than 1 in 2000 people in the UK). This includes establishing a "National Specialty Lead for Rare Cancers" to advise on and facilitate research, including connecting potential clinical trial participants.
• Disclosure of Information for Research: The bill amends the Health and Social Care Act 2012 to allow NHS England to disclose patient information to facilitate relevant clinical trials for rare cancers. This is subject to data protection laws.
• Extent and Commencement: Sections 2 and 3 apply to England and Wales only; the rest of the Act applies across the UK. The Act comes into effect two months after it is passed.

Government Spending

The bill doesn't specify direct government spending figures. However, it will likely necessitate funding for the review of marketing authorisations, the establishment of the National Specialty Lead for Rare Cancers role, and potential support for research projects. The exact cost will depend on the scope and duration of the initiatives undertaken.

Groups Affected

• Patients with rare cancers: Potentially benefits from increased research and development of new treatments.
• Researchers: May receive increased funding and support for research projects.
• Pharmaceutical companies: Could be affected by the review of marketing authorisations.
• NHS England: Takes on new responsibilities for data disclosure and potentially research coordination.
• Data Protection Authorities: Need to ensure compliance with data protection laws regarding information sharing.

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