One step closer for IPF patients to access life-extending anti-fibrotic drugs

March 2022

  • Reviews generally take 50 weeks but APF is urging NICE and Pharma companies to fast-track the process as thousands of lives will be impacted with further delay.
  • Patients will be consulted as part of this process in June 2022.
  • Lung fibrosis charity Action for Pulmonary Fibrosis has campaigned for over five years to make antifibrotic drugs available immediately a patient is diagnosed with idiopathic pulmonary fibrosis(IPF).  Evidence shows that antifibrotics not only slow progression but also extend lives by up to two years or more.

Over 32,000 people in the UK have the devastating and terminal lung-scarring disease idiopathic pulmonary fibrosis but thousands of patients with early stage disease are denied life-prolonging anti-fibrotic drugs.    Under current NHS guidelines, patients can only begiven antifibrotics once their lung function dips below 80%.   Patients have been fighting alongside APF for these unjust guidelines to be changed. 

Bob Bray, from London who has IPF, says:  “This makes no sense to me.  Why wait for patients like me to deteriorate before treating me?  Surely this adds a further burden on the NHS.  I don’t hear of cancer or HIV patients being told they have to wait until their disease deteriorate before they are eligible for life prolonging drugs.”

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

“It’s great news that NICE is going to evaluate the use of the anti-fibrotic drug, nintedanib for early-stage Idiopathic Pulmonary Fibrosis (IPF) patients in the UK. Fortoo long, people living with this devastating lung scarring disease have had to wait for their disease to get worse before being given drugs which can help slow it down and extend their lives.  I know from talking to patients and their families this news offers hope but they are disappointed that the appraisal may take a year to complete. We call on NICE to fast-track the process.  Patients can’t afford to wait longer.”

There are currently two anti-fibrotic drugs –Pirfenidone and Nintedanib – that can slow the spread of the lung fibrosis but people are denied these drugs until their disease worsens.

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Further information and interview requests:
Emma Pelling,,07958 558172

About Action for Pulmonary Fibrosis
Action for Pulmonary Fibrosis (APF) is a growing community of patients, families, researchers and healthcare professionals striving to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future. We provide personalised support to patients and families – and raise awareness of pulmonary fibrosis through campaigning, fundraising and education. We are also committed to funding research to improve quality of life for people living with pulmonary fibrosis today and tomorrow.