The Pulmonary Fibrosis Trust is deeply disappointed by NICE’s draft decision not to recommend nerandomilast for routine NHS use in people living with idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF).
As one of the organisations participating in the consultation process, alongside Asthma + Lung UK and Action for Pulmonary Fibrosis, we are currently preparing a detailed response to NICE on behalf of the pulmonary fibrosis community. Our submission will focus on the experiences and priorities of patients and families affected by these devastating conditions.
Pulmonary fibrosis is a progressive, life-limiting disease that affects every aspect of daily life. While clinical assessments naturally focus on lung function, patients tell us that declining lung function means far more than a number on a test result. It means increasing breathlessness, loss of independence, reduced mobility, growing reliance on carers and, for many, the need for supplemental oxygen.
Evidence gathered by the Pulmonary Fibrosis Trust from more than 500 people living with pulmonary fibrosis demonstrates the significant burden of the disease. Many respondents reported needing help with everyday activities such as shopping, walking, cooking and personal care, while almost half were using supplemental oxygen. Although oxygen can be life-enhancing and essential, many patients described the practical, emotional and social restrictions that oxygen dependency brings, including limitations on travel, social participation and independent living.
We recognise that NICE’s draft decision is not a judgement that nerandomilast is ineffective. Rather, the concerns relate to uncertainty around cost-effectiveness and comparative evidence. However, from a patient perspective, treatments that have the potential to slow the decline in lung function can have a profound impact on maintaining quality of life, independence and participation in family and community life for longer.
The Trust is also concerned about the limited treatment options currently available to people with IPF and PPF. Existing antifibrotic medications are not suitable or tolerable for everyone, and many patients report side effects that significantly affect their daily lives. Greater treatment choice remains an important unmet need within the pulmonary fibrosis community.
Nerandomilast is the first new medicine licensed for pulmonary fibrosis in the UK in more than a decade, offering renewed hope for patients and families affected by these relentlessly progressive diseases. As NICE continues its evaluation, we urge all parties to work constructively to address the remaining uncertainties and explore a pathway that could enable eligible patients to access this treatment through the NHS.
The Pulmonary Fibrosis Trust will continue to ensure that the voices of patients and carers are heard throughout this process and looks forward to submitting further evidence to NICE as part of the ongoing consultation.
https://www.nice.org.uk/consultations/3453/1/recommendations