The Rare Cancer Bill has received royal assent, meaning it has now passed into law and is now the Rare Cancers Act. This is an important moment for people diagnosed and living with rare cancers, including WM and LPL. The Act recognises the long-standing inequalities in diagnosis and treatment for people with rare cancer and has been designed to incentivise research and investment into treatment of this group of diseases.
The Act contains legislation to:
- Encourage greater research into rare cancers
- Identify more patients who are eligible for clinical trials
- Create a National Lead for rare cancers to provide expert advice in this specific area and improve leadership and co-ordination at a national level
- Review regulations for some medicines used for rare cancers to help improve access
We welcome the Act as a way of improving the lives of people with WM and LPL. Too often we hear about the obstacles in getting access to new treatments or clinical trials that could really help people to live well with their disease. A greater focus on rare cancers at a national level will help narrow the inequalities faced by people with WM and LPL. Already we have seen elements of Act embedded in the National Cancer Plan which for the first time has included recommendations specifically for rare and less common cancers.
A huge thanks goes out to Dr Scott Arthur MP and the campaigners who drove this Bill.
