Lung Fibrosis is a progressive, life-limiting situation that causes scarring of the lungs, making respiratory more and more tough
Sufferers residing with Lung Fibrosis have issued a name for presidency motion to sort out what they describe as systemic delays, inequality, and neglect of their care. At a particular briefing in Leinster Home this week attended by over 40 TDs and Senators the Irish Lung Fibrosis Affiliation (ILFA) launched a daring new nationwide technique that calls for structural change, funding in regional companies, and recognition of the situation as a well being precedence.
L-R: Lung Fibrosis affected person Seán O’Sé; Irish Lung Fibrosis Affiliation CEO, Maureen O’Donnell; and Respiratory Lung Specialist on the Mater Hospital, Professor Jim Egan
The technique, Reaching Fairness: Innovating Lung Fibrosis Care in Eire (2025–2028) outlines a complete imaginative and prescient to rework outcomes for the estimated 5,000 folks presently affected by the illness, with roughly 1,000 new instances recognized yearly.
Lung Fibrosis is a progressive, life-limiting situation that causes scarring of the lungs, making respiratory more and more tough. Many sufferers require long-term oxygen assist. Most are over 65, and the situation considerably reduces life expectancy. But regardless of its severity, sufferers face lengthy diagnostic delays, patchy entry to care, and excessive out-of-pocket prices—notably these residing outdoors main cities.
“This illness is devastating and on the rise,” mentioned ILFA CEO Maureen O’Donnell. “However sufferers are falling by means of the cracks. They’re being denied the companies Sláintecare promised—pressured to journey hours for care, pay out of pocket, and infrequently go undiagnosed for years. That should change.”
ILFA’s technique calls on the Division of Well being and the HSE to undertake 5 key actions:
- Set up a Nationwide Scientific Programme led by the HSE to make sure constant referral pathways, care requirements, and governance throughout Eire.
- Create a Nationwide Affected person Registry to tell analysis, planning, and medical apply by means of real-world affected person information.
- Increase Multidisciplinary Groups (MDTs) to incorporate important roles like respiratory consultants, dietitians, psychologists, and physiotherapists.
- Make oxygen remedy extra inexpensive, together with monetary aid measures comparable to electrical energy subsidies for residence concentrator customers.
- Spend money on rehabilitation and psychological companies, particularly in rural areas, utilizing a hybrid hub-and-spoke mannequin and digital care.
Affected person testimony introduced the urgency of the difficulty into sharp focus. Seán Ó Sé from Kerry recounted his 18-month delay in receiving a prognosis, solely to be informed he was ineligible for a transplant on account of age. “The price of journey to Dublin is mine alone. And geography, not severity of sickness, determines who will get care. That’s merely unjust,” he mentioned.
ILFA’s analysis highlights stark disparities in ready instances and entry between city and rural areas, with many sufferers ready two to a few months only for an appointment.
Regardless of guarantees from the HSE over two years in the past to nominate a senior clinician to guide a nationwide programme, no such appointment has been made.
“It is a name to motion,” O’Donnell mentioned. “Lung Fibrosis sufferers are making inconceivable selections—between getting therapy or shopping for groceries, or rationing oxygen to afford electrical energy. It’s unacceptable, and it should cease.”
The ILFA has secured a gathering with the Minister for Well being subsequent month hoping she’s going to press the HSE management to formally undertake and fund the brand new technique, guaranteeing that Lung Fibrosis sufferers are now not left behind.
