Today (13 March), the Scottish Medicines Consortium have announced the approved use of Nintedanib for people with idiopathic pulmonary fibrosis who have a predicted forced vital capacity (FVC) over 80%.

People with a FVC of 80% or under are already eligible to be prescribed Nintedanib in Scotland, but today’s news means that hospitals across Scotland will soon be able to prescribe Nintedanib to more IPF patients. Action for Pulmonary Fibrosis has been campaigning for more than half a decade to make this a reality for people living with IPF.

Evidence shows that antifibrotics, such as Nintedanib, not only slow progression but can also extend lives by up to two years or more. Over 70,000 people in the UK have the devastating and terminal lung-scarring disease pulmonary fibrosis.

Maureen, Chair of the Fife and Tayside PF support group, says:

Thank you SMC. You have no idea how welcome this news is. The support group I run and other patients I am in contact with know about the change in England for Nintedanib which is available for IPF patients on diagnosis and are anxious for this announcement. I believe this will extend the life expectation for all IPF sufferers and feel Nintedanib has the most benefit in the early stages of the disease progression.

Photo of Maureen — Maureen, Chair of the Fife and Tayside support group

Don, who is living with IPF in Scotland, says:

A diagnosis of pulmonary fibrosis can be devastating as there is no cure and very few treatments. Being given an anti-fibrotic drug which can slow progression [of the disease] gives you as a patient hope, hope for having a life seeing family growing up and maybe staying alive long enough for research to either find a cure or further and better treatments.

Photo of Don — Don from Scotland, who is living with IPF

Steve Jones, Chair of Trustees at Action for Pulmonary Fibrosis, says:

This is a significant moment for patients and their loved ones affected by the devastating disease, idiopathic pulmonary fibrosis, in Scotland. We couldn’t have achieved this result without the support of patients, families, MPs, and clinicians who understood the injustice of this rule. We are delighted Nintedanib, which has shown to slow down disease progression and extend life, will soon be available to more IPF patients in Scotland. We of course recognise that this decision will put more pressure on healthcare professionals, and may mean longer wait times for patients, but we will do our best to support them and work together to improve outcomes for IPF patients.

Read the update from the Scottish Medicines Consortium.

More people living with IPF in Scotland to benefit from anti-fibrotic medication

Action for Pulmonary Fibrosis (APF) is delighted to announce their six-year campaign, backed by patients, families and medical experts, to end the restrictions on a life-extending anti-fibrotic drug for patients with idiopathic pulmonary fibrosis (IPF) in Scotland has been successful.