The Rare Cancers Bill is an opportunity to save thousands of lives
2 min read
The second reading of Dr Scott Arthur MP’s Rare Cancers Bill will take place in Parliament this Friday 14 March and could be a truly transformative moment in the UK’s approach to research for rare and less common cancers.
The Less Survivable Cancers Taskforce (LSCT) is supporting this Bill and its aims to incentivise research and investment into the treatment of rare cancers. As a coalition representing five cancers which are both incredibly deadly (brain, liver, oesophagus, pancreas and stomach) and less common, the LSCT has been voicing the need for improvements in early diagnosis, optimal pathways for everyone with a less survivable cancer, investment in research and action to understand and improve patients’ quality of life.
Every year in the UK, thousands of people are diagnosed with less survivable cancers but they still suffer from low awareness amongst the public and health practitioners. Delays in diagnosis have a detrimental effect on survival of these rapidly-advancing diseases, which are currently difficult or impossible to treat at later stages. Due to a legacy of neglect and underfunding, the average five year survival rate of a less survivable cancer is under 20%.
While there have been significant advancements in cancer care overall, patients with these cancer types continue to face unacceptable disparities in access to treatments, funding, and research. The Rare Cancers Bill provides a crucial opportunity to address these inequalities.
By having a named lead in government to support research and innovation for rare cancers, the Bill aims to improve strategic focus in this area and foster greater collaboration between key organisations, promoting innovative treatments that can lead to better outcomes for patients.
Several factors currently stand in the way of progress in rare cancer research, particularly the limited incentives for pharmaceutical companies to come into the market because of the rarity of these diseases. The Bill includes duties that could address this - for example by committing to a review of orphan drugs regulations, building on similar international initiatives in the EU and the USA.
We believe that the proposed measures within the Bill will also facilitate better communication between researchers and patients. This will ensure that more individuals with rare cancers are made aware of relevant clinical trials and research opportunities, and can access treatments that could prolong or save their lives.
As a Taskforce, we urge all MPs to support this bill by attending the second reading on 14 March and advocating for these essential changes to improve survival rates and treatment options for people diagnosed with rare and deadly cancers.
Anna Jewell, Chair of the Less Survivable Cancers Taskforce (LSCT), and Cameron Miller, Deputy Chair of the LSCT.
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