What the Rare Cancers Bill Means for Head & Neck Cancer

14 March marked a crucial moment for research into rare cancers, as the Rare Cancers Bill took another significant step toward becoming law!

Dr. Scott Arthur, a Labour MP, introduced this legislation in Parliament to drive much-needed research into cancers affecting fewer than 1 in 2000 people in the UK – including many types of head and neck cancer.

Head and neck cancers can have devastating outcomes, with late diagnosis often leading to poor survival rates. We believe this Bill has the potential to improve survival for head and neck cancer patients and other rare cancer communities that have long been overlooked.

We were delighted to see the Government, Conservatives, and Liberal Democrats unite in support of the Bill when it was debated for the first time last week.

Will the Bill Support People with Head & Neck Cancer?

Yes. If passed, this Bill could represent a major breakthrough for people affected by rare head and neck cancers, helping to secure the attention, research, and investment they desperately need.

While some head and neck cancers are more common, many—such as nasopharyngeal cancer and salivary gland cancers – are classified as rare diseases. These types fall within the scope of this Bill, which focuses on cancers affecting fewer than 1 in 2000 people.

What Would the New Law Do?

The Rare Cancers Bill has the potential to drive a major shift in how rare cancers are researched and treated. If passed, it would:

✅ Appoint a Named Government Lead for Rare Cancers
Rare cancers, including many types of head and neck cancer, struggle to attract research funding and attention compared to more common cancers. A named government lead would ensure a coordinated, strategic approach to rare cancer research and innovation, keeping these cancers on the agenda.

✅ Improve Patient Access to Research and Clinical Trials
Many patients with rare cancers miss out on potentially life-saving trials simply because they don’t know about them. This Bill would improve access to research opportunities, making it easier for eligible patients to participate in trials and helping promising treatments progress more quickly.

✅ Review and Strengthen “Orphan Drug Regulations”
Developing new treatments for rare cancers is costly, and pharmaceutical companies often prioritise more common diseases. This Bill would require the government to review incentives for rare cancer drug development, potentially leading to greater investment in new therapies for head and neck cancer patients.

What Happens Next?

With the Bill passing its Second Reading unchallenged, it will now move to the Committee Stage, where a group of MPs will examine it in detail.

This is a vital moment for rare cancer research, and we will continue to advocate for head and neck cancer patients to ensure they receive the support, treatments, and breakthroughs they deserve.

Stay tuned for updates as we push for better outcomes for everyone affected by head and neck cancers.

If you missed the debate, you can watch the full footage here
You can also read the official Hansard transcript here

How Can You Help?

This Bill is a big step forward, but we urgently need more funding to accelerate life-saving research for head and neck cancer patients.

Your donation could help fund groundbreaking research and new treatment and support vital studies that could improve survival rates for rare cancers.

Together, we can make a real difference for people affected by head and neck cancer.

Donate today and help save lives.