THOUSANDS OF PATIENTS WITH TERMINAL LUNG SCARRING GIVEN ACCESS TO DRUGS THAT COULD PROLONG THEIR LIVES

THOUSANDS OF PATIENTS WITH TERMINAL LUNG SCARRING 

GIVEN ACCESS TO DRUGS THAT COULD PROLONG THEIR LIVES

• 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 2022): NICE has agreed Specialist Centres in England will soon be able to prescribe the anti-fibrotic drug nintedanib for people living with idiopathic pulmonary fibrosis at the point of diagnosis.   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.
  
  

Lung scarring charity Action for Pulmonary Fibrosis has campaigned for over half a decade to make antifibrotic drugs available when a patient is diagnosed with idiopathic pulmonary fibrosis (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.

The news was met with elation from patients and their families.   Bill Kennedy, 65yrs from Leicestershire, was diagnosed idiopathic pulmonary fibrosis in May 2021 and has been unable to access antifibrotic treatments.  Hearing the news today Bill says:

“From looking at a somewhat bleak, short future, I feel I’ve been thrown a lifeline. It means my family and I can plan a future and can maintain a much better quality of life.”

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 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. ”