Thousands of patients with terminal lung scarring given access to drugs that could prolong their lives

December 2022

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) has been successful.

  • Patients with the life-limiting disease IPF no longer have to watch and wait while their condition deteriorates before getting the medicines they need. IPF is a devastating diagnosis which has a worse outcome than most cancers. The lungs become progressively stiffer and smaller leaving patients struggling to breathe.
  • Today (14 December): NICE has proposed that specialist centres in England should be able to prescribe the anti-fibrotic drug nintedanib for people living with IPF at the point of diagnosis, if their forced vital capacity (FVC) is above 50% predicted value. This will make possible a real step-change in treatment for thousands of people with this terminal lung disease. Authorities in the other three nations are expected to follow suit. View the statement from NICE.
  • Update: The proposed change was agreed, and the updated NICE guidance was published on 1st February 2023. This guidance confirms that people with at least 50% FVC predicted can be prescribed nintedanib at the point of diagnosis. Specialist centres and allowed physicians have 90 days from this date to ensure that eligible people under their care are offered nintedanib. Some people may still be unable to take nintedanib for other reasons.

Lung scarring charity Action for Pulmonary Fibrosis has campaigned for half a decade to make antifibrotic drugs available when a patient is diagnosed with IPF.  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.

FVC is a measurement that’s taken during lung function tests (spirometry). It tells you how much air you can forcibly breathe out after breathing in deeply. FVC is given as a percentage of the predicted measurement for someone of a similar age, gender, height and race, who doesn’t have a lung condition. The measurement helps you and your healthcare team to understand how well your lungs are working.

Nintedanib was previously only available to people with 50-80% predicted FVC. This meant that some people had to wait for their lung function to decline to below 80% predicted FVC before anti-fibrotic treatment could be started. These people can now be prescribed nintedanib at the point of diagnosis if their FVC is above 50% predicted.

The news was met with elation from patients and their families.

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

This is a landmark moment for patients and their loved ones affected by idiopathic pulmonary fibrosis.   We’d couldn’t have achieved this result without the support of patients, families, MP’s 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 all IPF patients from the point of diagnosis.

Dr Helen Parfrey, Consultant Respiratory Physician, Royal Papworth Hospital, says:

The NICE decision is a game changer for people living with IPF.  I am absolutely delighted that we can now offer nintedanib treatment.

Louise Wright, CEO at Action for Pulmonary Fibrosis, says:

Although this is a huge step forward, at APF we are concerned how ILD specialised services will cope with the increase in patients, whilst maintaining a focus on patient safety. Specialist centres urgently need support to meet the growing demands on their services.

Responding to the news that the National Institute for Health and Care Excellence (NICE) have approved the use of nintedanib for a wider range of idiopathic pulmonary fibrosis (IPF) patients: 


Henry Gregg, Chair of the Taskforce for Lung Health and Director of External Affairs at Asthma + Lung UK, said:  

We’re delighted NICE will be increasing access to nintedanib, to support people with the debilitating lung condition idiopathic pulmonary fibrosis (IPF). This drug has been shown to slow the progression of IPF, which currently has no known cure. Previously, nintedanib was not available to those in the earlier stage of disease. The lung capacity set range has now been extended, so those in the earlier stages of disease who weren’t eligible before, can get access to the drug. 
Currently in the UK, more than 32,000 people have IPF, which can be extremely mentally and physically challenging to live with, with symptoms such as breathlessness and fatigue. There are few medicines available to slow the progression of the disease, so this decision offers a beacon of hope to more people who could now benefit. 

Your questions answered:

How quickly can I access this anti-fibrotic medicine, nintedanib?

The NHS should make nintedanib available within 90 days of the announcement by NICE, which means in mid-March 2023.  But since nintedanib can only be prescribed by doctors in ILD Centres in England or general hospitals in the other 3 nations, patients may have to wait to get an appointment with a specialist respiratory doctor.

Does this mean I can now get the anti-fibrotic medicine from my GP?

No. Nintedanib can only be prescribed by a respiratory consultant at a hospital (see previous question).

Will all IPF patients with an FVC over 80% get the medicine?

All IPF patients may be considered for nintedanib but there may be medical reasons why some patients cannot safely be prescribed this medicine. If this is the case, your doctor will explain.