Dr Scott Arthur MP (Lab, Edinburgh SW) has introduced a Private Members Bill on Rare Cancers that sets out to raise awareness and tackle some of the issues facing research and clinical trial availability and access within the rare cancer community. It includes three key, relatively low-cost, measures:
- Appoint a named lead person, with The National Institute for Health and Care Research (NIHR), responsible for overseeing the delivery of rare cancer treatment research, and a duty on the Secretary of State for Health and Social Care: to provide an opportunity for Parliamentary accountability for the delivery of such new research.
- Commit the Department of Health and Social Care (DHSC) to review the UK’s Orphan Drug Regulations, to providing greater opportunities to conduct Rare Cancer clinical trials within the UK.
- Improve data access for clinical trials, by developing a bespoke contact registry for rare cancers through the NIHR’s ‘Be Part of Research’ online platform.
The Bill is due for a Second Reading debate on Friday 14th March: you can monitor its progress here
MPs normally return to their constituencies on Fridays, so it is important that MPs are asked by their constituents to remain in Westminster to support the Bill.
We, at Neuroendocrine Cancer UK, support the Bill.
And would ask members of our community to email/contact your MP to ask them to attend the second reading of the Bill on Friday, 14 March and support it too.
(Template letter here) – Please download and save a copy to amend, rather than using the original
“Rare Cancer” Definition: Just to clarify that the definition of “rare cancers” used in the Bill is the rare disease definition “a condition which affects less than 1 in 2,000 people”.
An “Orphan Drug” is a medicine that is developed to treat a rare disease.
Following the withdrawal of the UK from the EU, orphan medicinal products in the UK are governed by the Human Medicines Regulation (“the UK Regulation”).
Note: The assessment criteria for grant of orphan designation in the UK are effectively the same as criteria as the EU Regulation, with the additional requirement that the prevalence of the condition must not be more than 5 in 10,000 in the UK specifically.