Today, Scott Arthur, MP for Edinburgh South West, will take his Rare Cancers Private Members’ Bill to Parliament, asking for MPs to help make it policy.
We were honoured to work closely with Scott in developing and shaping the Bill. And, in writing to your MP and asking them to attend and back it, your input could also prove pivotal.
"Rare cancer patients in the UK face a bleak outlook," said Scott. "Treatment advances for some rare cancers have stalled for decades, and the UK is falling behind other countries. Although rare cancers account for roughly 25% of UK diagnoses, patients struggle to access the limited number of new treatment trials that exist in the UK.
"With 92,000 deaths per year, collectively, rare and less common cancers are anything but rare. If you are diagnosed, the deck is already stacked against you. My bill aims to change that."
If the Rare Cancers Bill becomes legislation, it could significantly improve research and treatment pathways for patients, ensuring that people affected by rare cancers such as brain tumours receive the attention, research and treatments they so desperately need.
The Bill aims to do this by placing a duty on the Government to support research and innovation for rare cancers through an appointed rare cancer lead; to review the Orphan Drug Regulations, with respect to rare cancer patients; and to ensure that patients can be easily contacted about relevant research and clinical trials.
This represents a vastly different diagnosis journey than the tightrope of fear and frustration currently tread by brain tumour patients and their families.
Scott Arthur’s Bill was inspired by the loss of his father-in-law Ivor Hutchison (pictured above) to a glioblastoma, at the age of 76, just six months after diagnosis. In generously sharing his personal story with those present in Parliament today, Scott stands with and for the thousands of families in the UK each year who lose a loved one to a brain tumour.
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