Advocacy

Working on bAdvocacy human paper chain ehalf of the Lung Fibrosis Community

For more than 20 years, the Irish Lung Fibrosis Association (ILFA) has provided education, advocacy and direct supports to patients and the wider lung fibrosis community. We promote change, we challenge current practice, we speak up on behalf of our community, and we collaborate with other patient organisations, alliances, and networks.  

Our Advocacy Work 

As Ireland’s national lung fibrosis charity, our advocacy works across all levels of Government to ensure lung fibrosis patients receive the best care and quality of life possible. Every day, the HSE, Government departments and State agencies make important decisions about the policies and resources that affect the lives and wellbeing of people with lung fibrosis, their families and caregivers. We aim to influence those decisions for the benefit of our members. 

Our Independent Voice 

ILFA is a not-for-profit organisation which receives a very small amount of project funding from the State. While the amount of State funding we seek to support our patient programmes may grow in the coming years, our strategy is to limit State funding to less than 20 percent of total funding. We have taken this position to allow us to be an independent, committed and informed voice for those affected by lung fibrosis. Our priorities for lung fibrosis policy and the patient supports and services we provide are shaped by those directly affected by the condition. We also lobby Government to introduce policy changes that can support earlier detection, improved access to specialised healthcare services, and improved health outcomes.  

How We Advocate 

We raise awareness of lung fibrosis related issues and campaign for policy and legislation change. 

We regularly meet with elected representatives, civil servants and policymakers to advise them on patient priorities and how we think policy and legislation can support and improve the lives of people with lung fibrosis.   

Our independent voice and our ongoing stakeholder engagement with patients, front-line staff, professional bodies, research and technical groups across Ireland and the EU means that we can speak in an informed and authoritative way. 

We produce briefing notes for elected representatives on lung fibrosis issues, we take part in Department of Health, Oireachtas and other public consultations, we issue pre-budget submissions, shape political party manifestoes, and run information campaigns during elections. 

Our Priorities 

What We Want from Parties in Government: Equitable healthcare as was envisioned in Sláintecare for lung fibrosis patients can only be realised through the establishment of a Clinical Care Programme. While we work toward this goal, we have interim priorities that if properly funded by the Irish Government, will go a long way in supporting lung fibrosis patients. 

  • Patient Access to Pulmonary Rehabilitation – currently lung fibrosis patients are denied access to the HSE’s pulmonary rehabilitation programmes that take place in the community. ILFA recently requested resourcing to expand community pulmonary rehabilitation access to include ILD patients.  
  • State Funding for Patients and ILFA Patient Programmes – currently ILFA’s programmes are reliant on the generous donations of the lung fibrosis community. It’s unfair to ask patients and their families to fund programmes that should be an entitlement provided by the State. Many patients are also struggling with high costs of living with a chronic and progressive disease, medical care and utilities. ILFA recently requested the establishment of a tax rebate programme for patients to offset increased electricity costs.
  • Establish a Patient Registry – Without a patient registry, there is no way of knowing how many lung fibrosis patients there are in Ireland or what their care requirements are. A patient registry would allow for greater coordination and planning for this disease, potentially saving the HSE ongoing costs. ILFA recently requested funding be provided to the National Office of Clinical Audits (NOCA) to conduct a patient audit – the first step in developing a patient registry. 
  • Resource a Clinical Care Pathway – the HSE’s 2023 promise to resource a Care Pathway – a critical step in establishing a dedicated Clinical Care Programme – has not yet been actioned. In April of 2023, ILFA was informed by the HSE that 0.2 WTE would be appointed to assess the environment for ILD patients and develop a Clinical Care Pathway, but the resource was never hired. ILFA recently requested funding be ringfenced in the 2025 budget for the resource to ensure the action is progressed.

Our 2024 Advocacy Action Plan 

  • Advocating for our priorities with local and national politicians through 1) ongoing meetings with ILFA representatives 2) local election communication and advocacy campaign. 
  • April/May presentations and briefings before the Oireachtas Health Committee to outline our key priorities with particular focus on 2025 budget considerations and tax policy changes. 
  • July launch of ILFA’s pre-budget submission. 
  • Commissioning a report on the status of lung fibrosis in Ireland to be launched in the early autumn 2024 highlighting key issues and potential solutions regarding our priorities. 
  • Advocacy leading up to the General Election including the incorporation of priorities in political party manifestos, providing Party briefings via the AV system at Dail Eireann. 
  • After the establishment of the new Government, standing up a cross-party committee on lung health, chaired by ILFA, that transcends the existing political structure, providing a bridge into the next Government. 

How You Can Help 

We need your help advocating for the key priorities outlined above. Local, EU, and National elections are an opportunity to elevate our message and create the changes we need for lung fibrosis patients and their caregivers. Please take the following actions through the upcoming election cycle: 

  • Contact your local councillor or T.D. through their office by email or phone. 
  • Attend public meetings and speak with candidates when they canvas in your local area. 
  • Spread the word across your family, friends, and social networks.  

Note: The Irish Lung Fibrosis Association is registered with the Register of Lobbying and files returns accordingly with the Standards in Public Office Commission.