ILFA Meet Minister to Highlight Inadequate Care

Press Release Issued by the Irish Lung Fibrosis Association (ILFA)

Tuesday August 26, 2025

Lung Fibrosis Community meet Minister to highlight inadequate care

Awareness drive on Lung Fibrosis taking place during September

Life-limiting condition affects 5,000 people and numbers are rising

The Irish Lung Fibrosis Association  and members of the Lung Fibrosis community are this week meeting with the Minister for Health calling for a radical overhaul of services – including a national clinical programme, investment in community services and a registry of patients.

These issues will be raised with Minister Jennifer Carroll MacNeill on Tuesday, August 26 in advance of a nationwide Lung Fibrosis awareness drive for the month of September led by the Irish Lung Fibrosis Association (ILFA).

Lung Fibrosis is a serious, life-limiting and progressive disease, causing scarring of the lungs which makes breathing difficult – affecting approximately 5,000 people in Ireland.

Often patients need oxygen to assist breathing. Most commonly diagnosed in people over the age of 65, Lung Fibrosis numbers are rising with an estimated 1,000 new cases each year.

ILFA CEO Maureen O’Donnell said: “Despite being on the increase and a devastating disease that significantly shortens lifespans – patients experience long delays in diagnosis, fragmented care, and an inability to get the treatments and multidisciplinary services they need.

“For these reasons ILFA together with members of the Lung Fibrosis community are meeting with the Minister for Health. At the meeting we will present the solutions included in ILFA’s Equitable Care Strategy launched in June and a funding proposal from our Pre-budget Submission launched in July.

Lung Fibrosis patient Seán Ó Sé from Kerry has described how a lack of awareness delayed his diagnosis.

“When my breathing difficulties started six years ago, I did not know the challenges that lay ahead. It took 18 months to be diagnosed. Unfortunately, specialist care is limited to eight centres, most of which are in Dublin. I live in West Kerry and must travel a large distance to receive care – the cost of which is borne by me.“

September is Lung Fibrosis Awareness Month and ILFA will be running an awareness campaign under the slogan ‘Every Breath Matters – Know the Signs of Lung Fibrosis’. The campaign will culminate in events in Leinster House and Dublin city centre on World Lung Day (25^th September).

Maureen O’Donnell said everyone over the age of 65 should know the signs including shortness of breath, low energy and a persistent dry cough. Anyone with these symptoms should visit their GP right away.

“We are calling for an end to Lung Fibrosis patients being forced to make impossible choices. Despite being severely ill patients are forced to travel long distances, at their own cost, to receive care they badly need and this is unacceptable.

“Patients shouldn’t have to choose between getting treatment and buying groceries. They shouldn’t have to ration their oxygen supply because they can’t afford the electricity bill.  We hear these stories every day from our community and it’s got to stop.”

The asks which ILFA will be raising with Minister are the following:

• Establishment of a National Clinical Programme for Lung Fibrosis led by the HSE, with defined referral pathways, multidisciplinary care standards, and central governance to ensure consistency and equity across all regions.
• Creation of a fully funded national lung fibrosis registry to transform real-world clinical, social, and patient-reported data into actionable insights. This registry would support research, health care planning and delivery, policy decision making, and would inform clinical practice.
• Expansion of Multidisciplinary Teams (MDTs) including respiratory consultants, radiologists, dietitians, psychologists, and physiotherapists to ensure comprehensive, patient-centred care.
• Affordable oxygen therapy including financial relief measures such as electricity subsidies for patients who rely on home oxygen concentrators.
• Greater investment in pulmonary rehabilitation and psychological support services particularly in rural and underserved areas, supported by a hub-and-spoke care model and virtual service delivery.

Media Contact

Ronan Cavanagh, Cavanagh Communications: (086) 317 9731.

Note to Editor

Lung Fibrosis is progressive scarring of the lung which make it harder for oxygen to get into the blood, causing shortness of breath. It is a serious, life-limiting condition with no cure, but access to medications and care can slow disease progression.

Issued by the Irish Lung Fibrosis Association (ILFA)

Monday August 25, 2025