On 28th May 2021, NICE agreed to review its decision that currently restricts access to anti-fibrotic treatments. Patients currently only receive these treatments when their lung function dips below 80%.

This would not have been possible without the overwhelming support from patients, families and medical experts who have campaigned for over four years to make anti-fibrotic drugs available immediately after a patient is diagnosed with idiopathic pulmonary fibrosis

“NICE’s decision to re-appraise 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”. - Steve Jones, Chair of Trustees

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

Louise Wright, CEO:

“This is a landmark moment for patients and their loved ones with pulmonary fibrosis. We 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:‍

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

What happens next?

NICE will conduct a review (called a multi-technical appraisal) which normally takes 50 weeks. Patient organisations like APF and ILD clinicians will form an important part of the process. APF will ensure NICE understands patients views and experiences.

How long will it take before people with IPF can access anti-fibrotics upon diagnosis?

Realistically we are looking at Summer/Autumn 2022. NICE’s processes take around 50 weeks, after which the NHS has three months to put these changes into practice.

In the full report from NICE, one drug looks much more expensive than the other. Why is that?

In reality both drugs cost roughly the same per patient when you compare how many tablets each patient takes daily.

Why can’t the pharmaceutical companies lower their prices?

Pharmaceutical companies say they need to remain competitive and re-coup their initial investments into the new drugs.

APF will be keeping the pressure on. We will stay in regular contact with NICE so these changes happen as quickly as possible and update you with more information when it becomes available.

Email us at info@actionpf.org if you have any further questions.

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