Breaking News from NICE on anti-fibrotic treatment for non-IPF patients

October 2021

We are pleased to announce that our campaign, backed by patients, families and medical experts, to end the inhumane restrictions on a life-extending anti-fibrotic drug for patients with pulmonary fibrosis has been successful.

Today (18 October 2021): NICE has agreed the UK doctors will soon be able to prescribe the anti-fibrotic drug nintedanib for people living with non-IPF pulmonary fibrosis.   This will make possible a real step-change in treatment for thousands of people.

Action for Pulmonary Fibrosis have campaigned for half a decade to make antifibrotic drugs available immediately when a patient is diagnosed with pulmonary fibrosis.  Evidence shows that antifibrotics 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. Until now, only some patients with the most common type of the disease – idiopathic pulmonary fibrosis (IPF) - could be prescribed anti-fibrotic drugs.

This NICE decision means the anti-fibrotic medicine nintedanib can now be offered to the over 15,000 people living with other forms of the disease. These include patients with hypersensitivity pneumonitis (for example, farmer’s lung; bird keeper’s lung); pulmonary fibrosis associated with rheumatoid arthritis; and occupational diseases like asbestosis and silicosis.

The news was met with elation from patients and their families.   Carol Fielding, from Bolton, was diagnosed lung fibrosis and has been unable to access antifibrotic treatments.  Hearing the news today Carol says:

This news means everything to me.   It’s about seeing my young grandchildren reach more of their milestones and making some more memories for them.  

It’s about maybe living long enough that even the younger ones might remember me.”

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

“This is a landmark moment for patients and their loved ones with pulmonary fibrosis.   We’d couldn’t have achieved this without the support of patients, families, MP’s and clinicians who understood the injustice of this rule.  Nintedanib has been proved in a clinical trial and offers doctors another treatment they can use to slow down disease progression and hopefully extend life.   We are delighted this will now be available to patients.”  

Dr Nazia  Chaudhuri, Consultant Respiratory Physician, Manchester University NHS Foundation Trust, says:

“This is a game changer for patients with progressive fibrosis.  I am absolutely delighted with the NICE decision to be able to give life changing antifibrotic therapy to all patients with progressive lung fibrosis.”

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