Urgent Action Required – Transplants Remain Below Pre-Covid Levels
FOR IMMEDIATE RELEASE
Irish Lung Fibrosis Association Calls for Urgent Action Following Study Showing Heart and Lung Transplant Rates Remain Below Pre-Covid Levels
Dublin, 20 August 2026 – The Irish Lung Fibrosis Association (ILFA) has expressed deep concern following the publication of a new study showing that heart and lung transplant rates in Ireland have failed to recover to pre-pandemic levels, despite the passage of more than six years since the onset of Covid-19.
For people living with lung fibrosis and other advanced lung diseases, transplantation is often the only life-extending treatment available. The continued shortfall in transplant activity raises serious concerns about the capacity of Ireland’s transplant system to meet current and future patient needs.
ILFA has repeatedly highlighted the fact that lung transplantation has been one of the slowest areas of organ transplantation to recover since the pandemic. While many countries have restored or exceeded pre-Covid transplant levels, Ireland continues to lag behind, leaving patients facing prolonged uncertainty and, in some cases, running out of time while awaiting a suitable donor organ.
“These findings are deeply worrying but unfortunately not surprising,” said Maureen O’Donnell, CEO of the Irish Lung Fibrosis Association. “Behind every statistic is a person and a family living with the reality of a life-limiting lung disease. For many people with lung fibrosis, a transplant is their only chance of survival. When transplant numbers remain persistently low, patients pay the price.”
ILFA acknowledged the dedication and commitment of transplant clinicians, coordinators and intensive care staff working across the health service but warned that the latest findings point to broader structural issues that require urgent attention.
“The clinical expertise exists in Ireland,” Ms O’Donnell said. “What is needed now is sustained investment, greater capacity, improved donor identification and retrieval systems, and a clear national commitment to restoring lung transplantation to the levels patients deserve.”
The association also paid tribute to organ donors and their families, whose generosity makes transplantation possible.
“Every organ donor represents an extraordinary act of compassion. We owe a profound debt of gratitude to donors and their loved ones. The best way to honour that gift is to ensure that our transplant system is equipped to make the fullest possible use of every opportunity to save lives.”
ILFA is calling on the Department of Health, the HSE and Organ Donation Transplant Ireland to:
- Publish the ODTI 2025 annual report and a clear recovery plan for lung transplantation.
- Invest in additional transplant and critical care capacity.
- Strengthen organ donation awareness and family discussion campaigns.
- Improve transparency around transplant waiting lists, activity levels and outcomes.
- Establish measurable targets for restoring transplant activity to at least pre-pandemic levels.
For the hundreds of people across Ireland living with lung fibrosis and other serious lung conditions, the consequences of inaction are stark. “Patients haven’t time to wait,” Ms O’Donnell added. “This study must serve as a wake-up call. Ireland has the expertise, the goodwill and the public support to improve transplant outcomes. What is needed now is urgency, leadership and action.”
Ends
Media Contact:
Irish Lung Fibrosis Association (ILFA)
www.ilfa.ie
Email: info@ilfa.ie
Notes to Editors:
The Irish Lung Fibrosis Association is the national patient organisation supporting people living with lung fibrosis across Ireland. The organisation provides advocacy, education, research, patient support and awareness initiatives aimed at improving outcomes and quality of life for the lung fibrosis community.
We are excited to announce that our new “Guide for Living with Lung Fibrosis” is here! This guide will be distributed to all new members upon registration and issued to ILD centres across the country.
You can also view the guide online here: ILFA Patient Information Guide 2026
Huge thanks to everyone who contributed to the development of this booklet and to the HSE National Lottery programme for funding the design and printing!
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.