ILFA Calls for Budget 2027 Action to End Geographic Inequality in Lung Fibrosis Care
PRESS RELEASE
ILFA seeks €8.2 million investment to improve access, affordability and outcomes for people living with lung fibrosis
Dublin, July 2026 – The Irish Lung Fibrosis Association (ILFA) has called on the Ministers for Health and Finance to build on the progress achieved in Budget 2026 by investing in equitable, nationwide care for people living with lung fibrosis as part of Budget 2027.
Lung fibrosis, also known as interstitial lung disease (ILD), is a progressive, life-limiting condition that causes irreversible scarring of the lungs, leading to severe breathlessness, chronic cough, fatigue and declining mobility. An estimated 5,000-6,000 people in Ireland are living with the disease, yet access to essential services remains heavily dependent on where a person lives.
In its Pre-Budget 2027 Submission, ILFA is seeking targeted investment in patient supports, implementation of a new national clinical framework, the development of a national ILD registry and measures to reduce the significant financial burden faced by patients.
The organisation is calling for:
- €302,000 to continue and expand ILFA’s multidisciplinary patient support programmes, including its ILD Nurse Advice Line, Virtual Pulmonary Rehabilitation Programme, exercise classes, psychological counselling and nutrition support.
- €141,500 and 0.4 WTE HSE resources to lead implementation of recommendations arising from the National Framework for Interstitial Lung Diagnosis and Care in Ireland.
- €87,100 and 0.9 WTE HSE resources to establish a pilot National ILD Registry.
- €7.7 million in patient affordability measures, including medical cards for all ILD patients and tax relief for oxygen-related electricity and travel costs.
The submission follows the landmark allocation of €500,000 in Budget 2026 for lung fibrosis services, which has already delivered significant improvements in patient care. During the first six months of 2026, 134 patients enrolled in Virtual Pulmonary Rehabilitation, more than 180 patients received support through the ILD Nurse Advice Line and patient satisfaction with the service reached 4.92 out of 5.
However, growing demand has already resulted in waiting lists for some services.
“Budget 2026 demonstrated what can be achieved when people living with lung fibrosis are recognised and supported,” said Maureen O’Donnell, CEO of ILFA. “We have seen tremendous demand for services that help patients manage their condition and maintain their quality of life. The challenge now is to ensure these improvements are not lost.”
Despite recent progress, significant gaps in care remain. ILFA research has found that 75% of people surveyed had never been offered pulmonary rehabilitation, while more than 40% reported rationing oxygen because of cost and delivery difficulties. More than 80% expressed concern about the impact of oxygen therapy on household utility bills.
The organisation says the HSE’s National Framework for Interstitial Lung Diagnosis and Care (currently pending publication) provides a roadmap for addressing longstanding inequities in access to specialist nursing, pulmonary rehabilitation, psychological support and palliative care services. Dedicated implementation funding is now required to turn recommendations into meaningful improvements for patients.
ILFA is also advocating for the creation of a National ILD Registry, arguing that accurate and timely data is essential for service planning and resource allocation. Although an estimated 5,000 to 6,000 people are living with ILD in Ireland, there is currently no national system to accurately track patient numbers, disease burden or care needs.
In addition, the association is urging Government to address the financial pressures faced by many patients. Oxygen therapy and associated electricity costs can place a significant burden on households, forcing some patients to ration treatment despite its critical role in maintaining mobility and reducing hospital admissions.
“Our goal is simple,” said O’Donnell. “Everyone living with lung fibrosis in Ireland should have access to the right care, in the right place, at the right time, by the right person, regardless of where they live or their financial circumstances. Budget 2027 is an opportunity to make that vision a reality.”
Read the full budget submission here: ILFA 2027 Pre-Budget Submission – July 2026
ENDS
For media enquiries: Maureen O’Donnell
Irish Lung Fibrosis Association (ILFA)
+353 (0)1 5922501
info@ilfa.ie
www.ilfa.ie
Notes to Editors
- Interstitial Lung Disease (ILD), often referred to as lung fibrosis or pulmonary fibrosis, is a group of progressive lung diseases characterised by scarring of lung tissue.
- An estimated 5,000 to 6,000 people are living with ILD in Ireland.
- ILFA is Ireland’s national patient organisation supporting people living with lung fibrosis and their families.
Read all the ILFA News for the first half of 2026 here: ILFANewsletter-Spring-Summer-2026
2025 was a year of significant growth for ILFA, with revenue increasing by 23%, enabling us to expand our programmes and reach more of our community than ever before. Throughout the year, our work was guided by four core priorities:
- Advocating for equitable patient care
- Educating patients, their carers and the wider lung fibrosis community
- Supporting research leading to earlier diagnosis and improved healthcare outcomes
- Providing high-quality, awardwinning supports directly to patients
Our impact is reflected in the strong engagement across our services, including 2,658 exercise class participant sessions, two successful online Patient Information Days, seven “Let’s Talk” sessions, and eight educational bursaries awarded to medical professionals.
Read the full report here: https://ilfa.ie/wp-content/uploads/2026/07/Annual-Report-2025-Board-Approved-Compressed.pdf
Denise Cassidy Memorial Award for Kindness in Healthcare
The Denise Cassidy Memorial Award recognises exceptional kindness, compassion and humanity shown by healthcare workers to people living with lung fibrosis and their families.
Patients and carers are invited to nominate a healthcare professional or staff member whose support made a meaningful difference during their journey. Nominations are welcome for doctors, nurses, physiotherapists, social workers, counsellors, pharmacists, healthcare assistants, chaplaincy, catering, cleaning, clerical staff and others working in healthcare.
If you would like to nominate a healthcare hero, please complete the nomination form here: Nomination Form
All nominees will receive a Certificate of Excellence, while the overall winner will be presented with a special Dublin Crystal commemorative award.
The closing date has been extended for entries to 21st August 2026
Today the Mater Hospital launched its new resource offering guidance for patients with advanced lung disease who are considering lung transplant. The comprehensive guide provides helpful information about transplants, how to prepare for the journey, the transplant itself, and post-transplant aftercare.
There are a number of patient stories as well.
Access the site at: https://www.lungtransplant.ie/
Watch these excellent clinical trial briefings filmed at the US PFF Summit last November in Chicago.
The PFF CTI Series Part 1 includes the following talks:
- Boehringer Ingelheim’s DROP-FPF, a study to test whether nerandomilast slows progression of lung fibrosis for people in an early stage with a family history of PF.
- Chiesi’s phase 1b study assessing the safety and tolerability of zampilimab in people living with IPF.
- MAVRIC-IPF, a study assessing the safety and efficacy of metformin compared to placebo in people living with IPF who are at high risk for clinical events.
- Two studies from United Therapeutics: TETON-PPF, a phase 3 study of the efficacy and safety of inhaled treprostinil in people living with progressive pulmonary fibrosis (PPF) and DeciPHer-ILD, a real-world patient registry for people living with PH-ILD.
The PFF CTI Series Part 2 includes the following talks:
- Avalyn Pharma’s MIST study, a phase 2b clinical trial evaluating inhaled pirfenidone (AP01) in people living with PPF. Since November, Avalyn has announced they have successfully recruited for the trial and will report topline 12-month results in the second half of 2027.
- Two studies from Insmed about treprostinil palmitil inhalation powder (TPIP) for people living with PH-ILD.
- The PFF Community Registry, a series of surveys for all community members affected by PF or ILD.
While these trials are specific to the United States, there are ongoing trials in Ireland as well. In Ireland, patients cannot directly contact pharmaceutical companies regarding clinical trials. If you’re interested in participating in a clinical trial, contact your Respiratory Specialist team to find out which trials are available to you. For more information about clinical trials, visit our Clinical Trials page.
For more information: Christmas Card FAQ Sheet A4
ILFA are delighted that our ILD Nurse-Led Telephone Adviceline is now live and taking your calls! The adviceline is a new national Freephone service available Monday to Friday, 10am to 3pm, offering specialist nursing advice and support for people living with interstitial lung disease and their families. When you call, you will speak directly with an experienced ILD nurse who can provide clear guidance on a new or existing diagnosis, medications and side effects, changes in symptoms, day-to-day self-management, and living well with lung fibrosis, as well as signposting you to relevant supports across Ireland. This free, confidential, non-emergency service complements your usual GP and hospital care, giving you a dedicated space to ask questions, talk through concerns, and feel more confident managing your condition.
If you are living with ILD or supporting someone who is, we encourage you to get in touch and access the support available to you.
To contact ILFA’s Nurse-Led Adviceline, call our Freephone number at 1 800 99 88 11.
Please note that the ILD Nurse Led Adviceline does not replace urgent medical care when needed. If this is an emergency, dial 999 or 112 immediately to connect with the emergency services.
ILFA would like to extend heartfelt thanks and gratitude to all who supported us in 2025 — our advocates,
fundraisers, corporate partners, members, volunteers, and everyone who helped support our mission.
Without your continued support we would not be able to provide the vital services, research, education and
advocacy for those affected by Lung Fibrosis.
For more information, read our DONOR REPORT 2025!