Volume 6 | Issue 9 | 2020 | Respiratory Medicine
Patient advocacy – improving the lives of people with lung fibrosis AUTHOR: Ms Nicola Cassidy, on behalf of the Irish Lung Fibrosis Association The Irish Lung Fibrosis Association (ILFA) is a patient organisation founded to support individuals with lung fibrosis and their families. Lung fibrosis is an underlying pathology in a number of interstitial lung diseases (ILD), the most prevalent of which is idiopathic pulmonary fibrosis (IPF). ILD is thought to affect around 1,000 patients in Ireland – only slightly less than those diagnosed with cystic fibrosis. It is characterised by increasing breathlessness with progressive impacts on patients’ abilities to engage in normal activities of daily living and deterioration in qualityof-life. With a median survival time from diagnosis of 4.5 years, the prognosis for patients with IPF is worse than many cancers. And yet despite the prevalence and the seriousness of ILD, many healthcare professionals, let alone lay people, remain unaware of this condition. Poor recognition is a considerable factor in the late diagnosis of ILD, which in turn affects patients’ ability to access timely pharmaceutical treatments, which can slow the progression of the disease and holistic treatments to maximise quality-of-life. A critical part of ILFA’s work is patient advocacy; as an organisation we can have a greater voice than individual patients alone. There are many inadequacies in the diagnosis and management of ILDs and through engagement with multiple stakeholders, including politicians, healthcare professionals, the health service, industry representatives and more, we hope to address these unmet needs to improve the lives of those affected by ILDs. We have recently had success in ensuring that ILD is recognised as a serious lung condition for the categorisation of people who are highly medically vulnerable to Covid-19. Lack of inclusion of ILD in the initial Health Protection Surveillance
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Centre (HPSC) and HSE guidelines on cocooning reflects the poor awareness of this condition. Lobbying on behalf of patients, families, and healthcare professionals resulted in revision of the HPSC guidance. Research has shown that patients with ILD are at significant risk of serious illness due to Covid-19 and it is essential for protection of patients that guidelines on cocooning reflect this.
Clinical care programme A current focus of our ongoing work is to advocate for a HSE clinical care programme for lung fibrosis, as currently exists for COPD, asthma and cystic fibrosis and other conditions. Clinical care programmes provide benefits for patients and healthcare providers in clearly setting out a model for the provision of highquality care. National programmes ensure equity and timely access to appropriate care regardless of the patient’s location. Without such a unified approach, there are currently large discrepancies in the healthcare experiences of patients with ILD. Our research indicates that this is a priority area for ILFA’s advocacy work for patients, families, and healthcare providers working in this specialty, including the Irish Thoracic Society.
Transplantation We are also engaged in work to support the enactment of legislation which would give more patients the opportunity to access lung transplantation, an effective ILD treatment for those eligible. Enactment of the Human Tissue Bill would introduce a system whereby everyone will be considered a potential organ donor unless they have registered their objection. Opt-out legislation has the potential to increase the number of organ donors and life-saving transplant operations that can take place. Additional
funding to support staffing, infrastructure and resources for the national transplant centres is crucial as well as an ongoing national awareness campaign.
IPF registry Another advocacy priority is lobbying for adequate national funding to support the National IPF Registry. The objective of the IPF Registry is to characterise the true incidence of IPF in Ireland, in order to plan for future healthcare needs. In addition, ILFA recently contributed to the public consultation on the Draft Recommendations on the Implementation of a National Electronic Patient Summary.
Long Covid Lung fibrosis has been identified as one of the long term consequences of Covid-19 infection, so called ‘long Covid’. Research to characterise the relationship between Covid-19 and lung fibrosis is in its infancy, but available evidence suggests that there may be significant population morbidity arising from the persistent respiratory complications of Covid-19. ILFA may well be advocating for a rapidly growing patient population in light of this, giving our current work even greater urgency. We would like to take this opportunity to thank all of those who support ILFA, most of whom are volunteers, and many who balance these commitments with busy jobs, for their work and dedication to improving the lives of people affected by lung fibrosis. We also wish to acknowledge the great work being done by respiratory healthcare professionals in supporting lung fibrosis patients in these challenging times. n For more information please visit www.ilfa.ie References available on request
