Patients call to end restrictions on drugs that prolong the lives of people with lung scarring

September 2020

Action for Pulmonary Fibrosis, patients and their families call for an end to inhumane restrictions on access to life prolonging drugs.

  • 70,000 people in the UK have the devastating and terminal lung-scarring disease pulmonary fibrosis but patients are being denied life-prolonging anti-fibrotic drugs.
  • The charity Action for Pulmonary Fibrosis (APF) – is leading the campaign backed by patients and families calling for an end to the inhumane restrictions on access to drugs that extend the lives of many and could help those who develop lung-scarring following infection by COVID-19.
  • Currently patients don’t qualify for anti-fibrotic drugs until their condition gets worse.  

Steve Jones,Chair of APF, said: “As we face a potential surge of pulmonary fibrosis patients as a result of Coronavirus it is more important than ever that anti-fibrotic drugs can be prescribed as soon as people are diagnosed. You wouldn’t expect a cancer patient to wait for effective treatment until their cancer worsens and neither should those with pulmonary fibrosis, which has a worse outcome than many cancers.”

Action for Pulmonary Fibrosis is campaigning for anti-fibrotic drugs to be available immediately a patient is diagnosed with the lung-scarring disease pulmonary fibrosis. The campaign is launched at the start of Pulmonary Fibrosis Awareness Month in September 2020.  

The campaign could not be more timely.  Given the large number of people hospitalised with Covid-19, there is likely to be a surge in the number of people living with lung-scarring and in need of anti-fibrotic drugs.  

There are currently two anti-fibrotic drugs – Pirfenidone and Nintedanib – that can halt the spread of the pulmonary fibrosis but people are denied these drugs until their disease worsens. Under NHS guidelines, patients have to wait for drug therapy until their lung function dips below 80%.  

It is particularly distressing as the current life expectancy for patients is just three to five years following diagnosis. The anti-fibrotic drugs offer hope to thousands of patients who are living with a condition that has a worse outcome than most cancers.

Bob Bray, 70, a London firefighter for 40 years, has been desperately waiting two years after being denied anti-fibrotic drugs for his lung scarring disease idiopathic pulmonary fibrosis.  He has resorted to spending hundreds of pounds a month from his hard-earned pension to secure the drugs from India.

Professor Toby Maher, Consultant respiratory physician, Brompton Hospital, London said: Recent research confirms that early treatment with anti-fibrotic medication extends life expectancy by at least two to three years. Given this,it is heart-wrenching that in the UK, unlike in all other European countries,doctors cannot treat people with pulmonary fibrosis at diagnosis but instead have to wait until their lungs get irreversibly worse through scarring." 

New research from Professor Gisli Jenkins, Trustee of APF, reveals that Pulmonary Fibrosis and COVID-19 have much in common.

Professor Gisli Jenkins, commented: “If we are to deal with the emerging epidemic of fibrotic lung disease and the very immediate COVID-19 pandemic, it is vital we understand the shared mechanisms that exist between these two conditions in respect of cell injury and failures in lung repair.  This will ultimately help us to improve outcomes for people with scarring conditions of the lung.”

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

Case studies, medical experts and APF spokespeople available for interview.