A BILL introduced to improve outcomes of people with rare cancers has today (JAN 16) passed its second reading in the House of Lords.
The Rare Cancers Bill was put forward by Dr Scott Arthur , MP for Edinburgh South West.
It aims to “tackle long-standing gaps in research, treatment development and access to clinical trials for people affected by rare cancers, including brain tumours”.
If passed into law, the Bill would establish a named national lead for rare cancer research to improve accountability and coordination, as well as improve the sharing of cancer registry data across the UK, helping more patients take part in clinical trials.
The Bill would also require the government to review the UK’s orphan drug regulations to better support the development of treatments for rare cancers.
Orphan drugs are medications for treating rare medical conditions that affect only a small number of people.
A parliament report states that around 3.5 million people in the UK live with a rare disease, and one in 17 people are affected at some point in their lives.
Dr Arthur said: “I am delighted that the Rare Cancers Bill has passed its Second Reading in the House of Lords.
“This is an important milestone for patients and families who have waited far too long for rare cancers to receive the attention, coordination and investment they deserve.
“This Bill is about putting responsibility where it belongs, improving how research is led and coordinated, and making it easier for patients to access clinical trials that could transform outcomes.”
Dr Arthur brought forward the bill after losing his father-in-law to a brain tumour.
A statement from a spokesperson of Dr Arthur said that “the Bill has been developed in close partnership with over 40 charities and reflects concerns raised by patients, clinicians and charities across Scotland and the UK”.
The Rare Cancers Bill will now go on to committee and report stages in the House of Lords, before peers will debate its third reading.
The House of Lords cannot deny the passing of a bill but can hold up a Bill it disagrees with for about a year.
Ultimately the elected House of Commons can reintroduce it in the following session and pass it without the Lords’ consent.
