An Advocacy Update from our CEO

It’s been a very busy week for lung fibrosis!

Pictured(left to right) K McVicker, MD Macauley, C Edwards, R Hurley, M O’Donnell, Sean O Se, J Egan, E Cassidy, G O’Dowd, O McCafferty.

While Ed Swain and Ian Macbeth were running 217 kilometres from Dublin to Galway to raise awareness for lung fibrosis across the public, ILFA was at Leinster House raising awareness too (but in a very different way!). I was joined in the A.V. Room by Professor Jim Egan (ILFA Co-Founder and Board Member), Olive McCafferty (Respiratory Physiotherapist), Michael Darragh Macauley (ILFA Patron), Robert Hurley and Sean O Se (Patient Advocates) as we launched ILFA’s Strategy for Equitable Lung Fibrosis Patient Care to over 40 TDs and Senators. It was a brilliant turnout thanks to you! You contacted your representatives and they responded, attending the presentation, hearing our stories, and asking thoughtful questions. Several stopped by after the presentation to express their support going forward. Several as well told us of their own personal connection to lung fibrosis…whether it was a family member with the condition or a GP with lung fibrosis patients in his practice, they felt a deep sense of connection with our cause.

Afterwards, while members of our delegation celebrated with a well-deserved tea at Buswells around the corner. Our political advisor (Kathleen O’Meara – the best in the business) and I stayed behind to catch members of the Health Committee who were unable to attend. We made our case to them and they promised support going forward.  Our next stop will be to meet with Minister MacNeill in early July, and then we hope to meet with the Health Committee in September during our next awareness raising activity, Lung Fibrosis Awareness month.

You might not have seen much in the news about our work this week – which has been disappointing – but we reached our target audience of politicians and that’s really what mattered.

And it matters perhaps more than we realise…just an example…the very next day I attended a conference hosted by the European Respiratory Society on preventing respiratory diseases. There were many powerful presentations highlighting the links between respiratory disease and pollution, climate change, and other environmental factors. Panel members discussed education interventions, new ideas for testing and early treatments, it was really exciting…except for one thing. There was no mention of lung fibrosis! Presentation after presentation about COPD, asthma, and every other significant respiratory disease except lung fibrosis. An HSE representative touted the new regional care model and the respiratory programme providing pulmonary rehabilitation to people with lung diseases, failing to mention that this community model and the pulmonary rehabilitation programme excludes lung fibrosis patients. Another researcher from UCD provided a “comprehensive” overview of respiratory diseases in Ireland, all the while failing to mention lung fibrosis. I was shocked – how was lung fibrosis not a part of the conversation?

I left that conference thinking that in many ways lung fibrosis is a forgotten disease. And I’m angry about that – it shouldn’t be this way – not in a country as wealthy as Ireland. Everyone has the right to proper healthcare, lung fibrosis patients included, and this week we made some progress in ensuring the HSE isn’t allowed to forget. For me, that is what this week was about, being the flea on the elephant of the HSE’s bureaucracy.

So well done to Ian and Ed on their incredible feat of physical endurance – we are so grateful for your help getting the word out. And well done to our advocates who contacted their TDs and Senators. Well done to our advocacy team too. And last but not least, well done to our patients, for having the strength and determination to fight this disease every day. You inspire us and you motivate our community. Working together we won’t let the HSE forget lung fibrosis; we’ll demand better services and eventually we’ll prevail.

Thank you so much for your support!