The Rare Cancers Bill - a blueprint for inclusive health reform?

The Rare Cancers Bill, a Private Member’s Bill introduced by Dr Scott Arthur MP, is currently progressing through the House of Lords. If successful, it could become a shining example of mobilising Parliament to drive patient-led policy change.

The urgent need for action to tackle rare cancers

Rare Cancers are classified as affecting fewer than 1 in 2,000 people. However, in reality these cancers are not ‘rare’ at all. Nearly half of all cancer diagnoses are a less common or rare cancer and they account for over half of cancer deaths in the UK.

Despite the impact on patients and the health system, rare cancers have been left unaddressed, with limited inclusion within government policy and a lack of progress on health outcomes. Over the last decade, while the incidence of rare and less common cancers has risen by 3.8%, survival rates and early diagnosis rates have stalled when compared to common cancers.

Research funding is critically important for rare cancers; however, only 54% of non-industry spend on cancer research is on rare and less common cancers. The Rare Cancers Bill – which aims to incentivise research and investment to address these shortfalls – is therefore vital for improving the lives of the 180,000 people who are diagnosed with rare or less common cancers every year in the UK.

Advocacy in action – lessons from the Rare Cancers Bill

If successfully passed through both houses, the Bill would require the Health Secretary to promote and facilitate research into rare cancers, improve patient recruitment into rare cancer clinical trials, require the Government to review the law on marketing authorisations for cancer-treating orphan drugs, and establish a National Specialty Lead for Rare Cancers.

As such, the Bill holds vast potential for transforming outcomes for people living with rare cancers.

There are clear lessons to be learnt here on how positive change can be achieved through effective advocacy. The Bill’s success so far rests on a combination of conditions that could be applied to future efforts to deliver positive policy change through parliamentary channels:

• Dr Scott Arthur MP, sponsor of the bill, is a passionate advocate whose determination is rooted in personal loss to a rare brain cancer.
• It aligns closely with key Government priorities, including notably the upcoming National Cancer Plan.
• Crucially, it doesn’t call for significant new Government spending, which makes its measures easier to enact within the current fiscal environment.
• It won the support of several large-scale cancer charities, strengthening the case for change through their own advocacy efforts.
• Most significantly, those living with rare cancers and their families provided compelling evidence for change and, through cancer charities, they have been able to contribute to the solutions set out in the Bill. As such, their lived experience has shaped the framing of the Bill and ensures it will address real-world challenges, keeping the focus on meeting the needs of patients with rare cancers.

A blueprint for future health reform

The Rare Cancers Bill is an important example of how positive change can be driven through traditional, and often underused parliamentary channels. In this instance, success depended on capturing the patient experience, amplifying patient voices, winning the support of key advocacy groups, and aligning with Government priorities. This inclusive, response, and collaborative model of policymaking offers valuable lessons for how other policy challenges in areas of unmet need could be addressed.