Strategy Launch – Equitable Care for Lung Fibrosis Patients

The Irish Lung Fibrosis Association have today launched a new strategy calling for a radical overhaul of services – including a nationwide clinical programme, investment in community services and a national registry of patients.

The strategy was launched today by the Irish Lung Fibrosis Association (ILFA) at a dedicated briefing for TDs and Senators at Leinster House.

Lung Fibrosis affects approximately 5,000 people and is a progressive disease, causing scarring of the lungs which makes breathing difficult and shortens life expectancy. 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 diagnosed 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.

“Lung fibrosis patients are turned away from their community medical services that Sláintecare promised. Despite being severely ill they are forced to travel long distances, at their own cost, to receive care they badly need and this is unacceptable.

“For these reasons ILFA, together with patients and the medical community are today launching a Strategy Achieving Equity: Innovating Lung Fibrosis Care in Ireland (2025–2028) to improve quality of life and outcomes for the thousands people with this condition.

“The plan calls for urgent structural reform, significant investment in community care in all regions, and stronger public and political recognition of lung fibrosis as a national health priority.”

Lung Fibrosis patient Seán Ó Sé from Kerry told how the shortage of services delayed his diagnosis.

“When my breathing difficulties started six years ago, I did not know the challenges that lay ahead. I did not have a timely diagnosis – it took 18 months to be diagnosed with Lung Fibrosis. When I was finally diagnosed, I was informed that it was extremely unlikely that I would be eligible for a lung transplant because of my advancing age.

“There is no cure for Lung Fibrosis, but once diagnosed patients should receive specialist care (anti-fibrotic drugs) which slow disease progression. 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.

“I have met other patients who wait years for a correct diagnosis. Once it is received, geography and income are more likely to determine the quality and speed of care than severity of symptoms. It’s not fair that Lung Fibrosis patients do not get the care and treatment often available for other diseases, and that are not as imminently terminal as this condition.”

ILFA’s research reveals stark geographical disparities. Appointment waiting times of two to three months are common, particularly for patients living away from urban centres.

The charity today urged the Government to act on the recommendations in the strategy and commit to a National Clinical Programme. The strategy is the result of a rigorous six-month independent review led by Prospectus Consultants with inputs from healthcare professionals, patients and international comparators.

Maureen O’Donnell said action to address the unmet needs of patients with Lung Fibrosis is long overdue and she called on the Department of Health to adopt the following aims:

• 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.

Ms. O’Donnell concluded: “More than two years ago the HSE promised to appoint a Senior Clinician to develop a Clinical Programme plan. Today, this has still not happened. How many people have been denied care while the HSE is stuck in the mire of its own bureaucratic inefficiency? This Strategy is call to action that the Minister for Health and HSE must adopt.

“We are calling for an end to Lung Fibrosis patients being forced to make impossible choices. 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.

Read the Report: ILFA Final Strategy