Rare Cancers: A Bill of Hope and the Fight for Fair Treatment

The Bench Report

This episode of 'The Bench Report' delves into the passionate and moving debate surrounding the Rare Cancers Bill, a crucial piece of legislation aiming to address the disparities faced by individuals diagnosed with less common cancers.

Discover why so-called "rare" cancers collectively account for nearly half of all cancer diagnoses and over half of cancer-related deaths, yet often receive disproportionately less attention and funding.

We explore the key measures of the Bill and the overwhelming cross-party support for its potential to transform the lives of patients and their families, offering a beacon of hope in the face of devastating diseases like glioblastoma, pancreatic cancer, and rare childhood cancers.

Key Takeaways:

• "Rare" cancers are collectively common, representing a significant portion of all cancer diagnoses and deaths.
• Patients with rare cancers often face delayed diagnosis due to a lack of awareness and familiarity with their symptoms.
• There is a significant lack of research and development in rare cancer treatments compared to more common cancers, leading to poorer survival rates.
• Access to clinical trials is limited for rare cancer patients, with a large percentage not even being offered the opportunity to participate.
• The Rare Cancers Bill aims to appoint a national specialty lead for rare cancer research.
• The Bill proposes creating single registries for rare cancer trials and patients to improve accessibility and recruitment.
• A key aspect of the Bill is to review the orphan drug regulations to better incentivize pharmaceutical companies to invest in rare cancer treatments and drug repurposing.
• The debate highlighted the urgent need for action and a more revolutionary attitude towards tackling rare cancers.

Read the extended shownotes on Substack.

Source: Rare Cancers Bill (Hansard)

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No outside chatter: source material only taken from Hansard and the Parliament UK website.

Contains Parliamentary information repurposed under the Open Parliament Licence v3.0.