Victory for thousands of terminally ill patients

Antifibrotic drugs offer hope to thousands of patients who are living with a condition that has a worse outcome than most cancers.

· Action for Pulmonary Fibrosis (APF) is delighted to announce their campaign, backed by patients, families and medical experts, to end the inhumane restrictions on life-extending antifibrotic drugs has been successful.

· Today (28 May 2021): NICE has agreed to launch a re-appraisal of antifibrotic drugs patients with idiopathic pulmonary fibrosis (IPF) which will hopefully result in all IPF patients have access to the drugs

· The re-appraisal takes 50 weeks but APF is now urging NICE and Pharma companies to fast-track the process as thousands of lives will be impacted with further delay.

Lung fibrosis charity Action for Pulmonary Fibrosis has campaigned for over four years to make antifibrotic drugs available immediately a patient is diagnosed with idiopathic pulmonary fibrosis. 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 many patients have been denied life-prolonging anti-fibrotic drugs. Currently patients don’t qualify for anti-fibrotic drugs until their condition gets worse. Under NHS guidelines, patients have to wait for drug therapy until their lung function dips below 80%.

The news was met with mixed emotions from patients and their families. Bob Bray, 71, 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.

Steve Hueck ,67yrs, from Coalville in Leicestershire, was diagnosed with idiopathic pulmonary fibrosis three years ago, says:

“This news offers hope to patients like myself. When you’re diagnosed with the condition, you’re given a death sentence. You are told that your disease is incurable, is only going to get worse and that you have, on average, only 3-5 years to live. You wouldn’t expect a cancer patient to wait for effective treatment until their cancer worsens, and neither should those with idiopathic pulmonary fibrosis, who have to wait until lung capacity falls below 80% before medication can be given to slow the progress of the disease. These drugs are all we have, whereas many cancers can be treated now with a range of treatments, enabling the sufferer to live with the condition, and this can begin shortly after diagnosis. The same urgency needs to be applied to idiopathic pulmonary fibrosis patients.”

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

“NICE‘s decision to re-appraise these two antifibrotic medicines for IPF is the news our patient community has been waiting for. It will hopefully result in all patients having access to these treatments. I know from talking to patients and their families this news offers hope but they are disappointed that the appraisal will take a year to complete. We need to ensure that access to these life-extending medicines happens as quickly as possible”.

Louise Wright, CEO 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 understand the injustice of this rule. It is now essential that we keep the pressure on and we call on NICE to FastTrack the process. Patients can’t afford to wait longer.”

Professor Gisli Jenkins of Imperial College and The Royal Brompton Hospital, says:

“I’m delighted with the NICE decision, which raises the prospect of extending treatment with antifibrotic medicines to all people living with the fatal lung disease, IPF. This would lead to better quality of life and longer lives for thousands of patients in the UK”.

Sarah MacFadyen, Vice Chair of the Taskforce for Lung Health, said,

“For the thousands of people living with idiopathic pulmonary fibrosis in the UK, it will be a relief to hear that steps are finally being taken to potentially increase access to life changing drug treatments. The announcement is a promising first step which will hopefully develop into meaningful change for the many patients affected by this issue.”

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.