Liam Galvin is a patient advocate for pulmonary fibrosis. He is the CEO of the European Pulmonary Fibrosis Federation (EU-IPFF). Liam will be attending the ERS Congress 2022 as a patient representative. We asked him about his role in patient advocacy and what he is looking forward to about attending this year’s Congress.
I live in Tipperary in rural Ireland and like many advocates I became involved with patient advocacy when a disease impacted my family. In my case, my wife Phyl and two of her siblings were diagnosed with a rare lung disease, idiopathic pulmonary fibrosis (IPF). This disease, whilst very severe and with higher mortality rates than most cancers, remains largely unknown to the public. In 2009 I had certainly never heard of it, but we were fortunate that in Ireland there was a small charity dedicated to supporting patients with IPF and other forms of pulmonary fibrosis (PF), the Irish Lung Fibrosis Association (ILFA). This small group of patients and volunteers provided much needed support to my family: explaining the disease, providing trusted information and putting us in contact with other patients and families going through the same struggles.
My wife and her siblings sadly passed away within a 2-year period of each other, with my wife dying at 56 years of age in 2014. Prior to her death, we had both become volunteers with ILFA. We were involved in fundraising, speaking to policymakers and raising awareness of IPF. I felt the vital work done by ILFA and the compassionate support they had shown my family needed recognition and my continued support. I have since remained an active volunteer with them and, at their request, shortly after my wife’s death I became involved in the formation of what was to become the European Pulmonary Fibrosis Federation (EU-IPFF), alongside patients and carers from other European patient groups.
I have attended every ERS Congress since 2014 and for me they have been an amazing opportunity to learn about my disease area and the latest developments and to witness the humbling efforts that clinicians and researchers are directing into helping patients. I also find it to be a great place to learn from other patient advocates.
This year I am looking forward to learning more about novel innovations being developed with the aid of technology, which should have a major impact on the diagnosis and treatment of PF. I am also keen to attend the sessions devoted to the update of the guidelines on diagnosis and treatment of IPF and progressive pulmonary fibrosis (PPF) as well as the updates on guidelines on biopsy. I will also be looking at developments and best practices in other diseases to see if they can be repurposed or copied within our patient community.
On a personal level I am looking forward to meeting face-to-face with other members of our advocacy community and members of our great scientific advisory board who volunteer so much of their time and expertise to the federation.
I will also be meeting with members of the ELF Patient Advisory Committee and networking with other patient advocates and patient organisation representatives at the ELF stand. I will be hosting meetings with industry and clinicians on the EU-IPFF’s upcoming Patients’ Adherence to Medication study and the 2nd European PF Patient Summit 2022, which will be taking place in November. Sight-seeing is unlikely as it is an intense few days, but I certainly hope to meet old friends and new as the Congress really provides that opportunity.
I feel it is vital that patient advocates attend the Congress so they can hear first-hand news and developments that will be impacting their patients back home. Without that knowledge, advocates cannot report back, cannot identify things they should be requesting from their national health systems and policymakers, and cannot see the huge depth of work that goes into research. As patients and advocates we often get frustrated that there is no cure, no treatment, but the Congress has taught me pragmatism, to direct my passion into partnership and collaboration.
For me, attending the Congress is about bringing the patient voice to clinicians, industry and research and to find ways patient involvement can bring value and focus to research. Patients can contribute in so many ways and I see the Congress as the ideal opportunity to make those partnerships, to have patients contribute to guidelines and statements, and to reinforce that patient involvement and advocacy can be a source of validation and advancement.
I look forward to bringing what I have heard and learnt back to my Irish and European colleagues so that we can share with our patients and carers news of new clinical trials, results and other developments that might help them or give them hope that one day this disease will find a cure or be managed. Patients and advocates with IPF and other forms of PF know research might not come in time to save them, but I have always been empowered by their willingness to contribute and help where they can in helping future generations.
Knowledge, networking and the pure logistical advantage of having everyone you might want to partner with being in one place and those who might want to partner with you knowing you are there.
I am delighted that this year is seeing a hybrid model; while the virtual model has allowed many more patients and advocates to participate and allowed for great elements like posters and abstracts to be more easily displayed, I welcome the opportunity to attend in person.
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