European Pulmonary Fibrosis Federation (EU-PFF)

As #PFMonth 2024 comes to a close, our dedicated EU-PFF members and partners have a powerful message: "Oxygen is a human right!" This past month, we have been advocating for equitable #OxygenAccess for all who need it. Our call for oxygen to be recognised as a basic human right reflects our hope that every #PulmonaryFibrosis stakeholder—medical professionals, healthcare authorities, researchers, patient organisations, and families—works together to achieve this goal. We extend our deepest gratitude for your support in raising awareness, sharing experiences, and advocating for change. Together, we have made significant strides, and we aim to build on this momentum as we continue our efforts to improve the lives of PF patients. #ThankYou #BreathingLife #CurePF # #OxygenAccess

Thank You to Our Sponsors for #PFMonth 2024! 🙌 We would like to extend our deepest gratitude to our amazing sponsors, Boehringer Ingelheim and Chiesi, for their outstanding support for this year’s Pulmonary Fibrosis Awareness Month. Together, we can make a meaningful difference by driving important conversations, raise awareness of key issues surrounding PF and work towards a better future for everyone impacted by this condition. Thank you for standing with us! #BreathingLife #OxygenAccess #CurePF

Today marks the final day of #PFMonth, and we want to thank everyone who has joined us in raising awareness and advocating for better #PulmonaryFibrosis support, research and policies, and equitable #OxygenAccess. However, don’t just stop here. We encourage you to take some time today to explore the resources, consultation guides, and informative videos available on EU-PFF.org and through our partner organisations. Whether you are a patient, caregiver, or simply want to learn more, these resources offer important information that can help you navigate this challenging condition. By educating yourself and others, you can make a real difference in the lives of those affected by PF. #CurePF #BreathingLife

Katarzyna Lewandowska, EU-PFF Scientific Advisory Board Member (Poland) and IPF Polish Society, highlights a significant issue: Many #PulmonaryFibrosis patients receive oxygen reimbursement for home use after respiratory failure is addressed, but those who need mobile oxygen devices earlier, especially during exercise, often find these are not covered. This reveals a critical gap in healthcare systems, where patients who require mobile oxygen for daily activities are left without the necessary support, significantly impacting their quality of life. We need to advocate for better support and more inclusive reimbursement policies. #PFMonth #BreathingLife #OxygenAccess #CurePF

As we near the end of #PFMonth, EU-PFF remains firmly committed to standing by #PulmonaryFibrosis patients worldwide. We continue to support their pursuit of better treatments, advancements in research, and equitable #OxygenAccess for everyone who needs it. Thank you for being an essential part of this journey. Let's keep the momentum going as we continue to fight for better outcomes for all those affected by PF. #CurePF #BreathingLife #Thanks

💡This week for #PFMonth, Gottfried Huss, EU-PFF Board Member, examines the crucial research areas that can help shape oxygen therapy to improve patient care: 𝗕𝗮𝗿𝗿𝗶𝗲𝗿𝘀, 𝗜𝗻𝗻𝗼𝘃𝗮𝘁𝗶𝗼𝗻𝘀, 𝗮𝗻𝗱 𝗕𝗲𝗻𝗲𝗳𝗶𝘁𝘀 𝗶𝗻 𝗢𝘅𝘆𝗴𝗲𝗻 𝗧𝗵𝗲𝗿𝗮𝗽𝘆 𝗳𝗼𝗿 𝗣𝘂𝗹𝗺𝗼𝗻𝗮𝗿𝘆 𝗙𝗶𝗯𝗿𝗼𝘀𝗶𝘀: 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗮𝗻𝗱 𝗧𝗲𝗰𝗵𝗻𝗼𝗹𝗼𝗴𝗶𝗰𝗮𝗹 𝗔𝗱𝘃𝗮𝗻𝗰𝗲𝘀 – Gottfried Huss 𝗕𝗮𝗿𝗿𝗶𝗲𝗿𝘀 𝘁𝗼 𝗮𝗻𝗱 𝗙𝗮𝗰𝗶𝗹𝗶𝘁𝗮𝘁𝗼𝗿𝘀 𝗼𝗳 𝗢𝘅𝘆𝗴𝗲𝗻 𝗧𝗵𝗲𝗿𝗮𝗽𝘆 𝗨𝘀𝗲 Supplemental oxygen is prescribed to treat hypoxemia in pulmonary fibrosis (PF) patients, but supply and adherence are challenging. Identifying barriers and facilitators to its use is key. The roles of caregivers and healthcare personnel (HCPs) should be analysed. External factors include the healthcare system, guidelines, prescriptions, and financing, while internal factors involve patient attitudes and beliefs. Technical issues, such as handling and portability of oxygen devices, also play a role. Further investigation is needed to identify factors that hinder or facilitate the initiation and ongoing support of oxygen therapy for PF patients. 𝗧𝗲𝗰𝗵𝗻𝗶𝗰𝗮𝗹 𝗜𝗻𝗻𝗼𝘃𝗮𝘁𝗶𝗼𝗻𝘀 𝗶𝗻 𝗛𝗼𝗺𝗲 𝗮𝗻𝗱 𝗠𝗼𝗯𝗶𝗹𝗲 𝗢𝘅𝘆𝗴𝗲𝗻 𝗧𝗵𝗲𝗿𝗮𝗽𝘆 Recent advances have led to lighter, quieter and more independent mobile oxygen concentrators and liquid oxygen strollers. These technologies must meet the varying needs of patients with interstitial lung disease (ILD) and growing oxygen demands. Flexible ambulatory treatment is a technological challenge, as mobile oxygen concentrators have limited capacity. Staying active is crucial for managing health, improving moods and boosting energy while preventing comorbidities like diabetes, heart disease, and arthritis. Constant oxygen flow may be be inadequate (too low/too high) for optimal muscle oxygenation during exercise. Future innovations, such as titrated, lightweight oxygen devices, for exercise require more support from patient advocacy groups and pulmonologists. 𝗕𝗲𝗻𝗲𝗳𝗶𝘁 𝗼𝗳 𝗦𝘂𝗽𝗽𝗹𝗲𝗺𝗲𝗻𝘁𝗮𝗹 𝗢𝘅𝘆𝗴𝗲𝗻 𝗳𝗼𝗿 𝗜𝗻𝘁𝗲𝗿𝘀𝘁𝗶𝘁𝗶𝗮𝗹 𝗟𝘂𝗻𝗴 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗻𝗱 𝗣𝗙 The benefit of long-term oxygen therapy (LTOT) for chronic obstructive pulmonary disease (COPD) has been proven over 40 years. Chronic hypoxia in COPD causes pulmonary hypertension - elevated pressure in the pulmonary vascular system. Early LTOT decreases the danger of pulmonary hypertension and improves survival in COPD. This evidence should also be explored for ILD and PF. Limiting the benefits to survival alone is insufficient; the potential benefit of LTOT and exertional oxygen encompasses all aspects of prevention and quality of life: anxiety, sleep, prevention of comorbidities like coronary heart disease, obesity and high blood pressure, exacerbations and hospitalisations. This list of research issues is certainly incomplete. __________________________ Share your thoughts and comments below! #BreathingLife #CurePF #OxygenAccess

Today we mark #WorldLungDay! Join us in raising awareness and advocating for clean air and healthy lungs for all. With millions suffering from lung diseases like #PulmonaryFibrosis, it is crucial that we support them by promoting better air quality and access to treatments. Together, we can make a difference for those affected by lung diseases and help improve their quality of life. #CurePF #PFMonth #BreathingLife #OxygenAccess

Achille Abbodanza from FIMARP (Italy) on the harsh reality of living with #PulmonaryFibrosis: “The difficulty is that you always have a timer on your life. You have to consider that when you go out if you have a concentrator. Okay, you can find electricity but if you are using liquid oxygen (called a stroller in Italy) you have to consider that when this bottle is finished you have to have another option. So, it is really difficult to manage this situation. Always with a timer on your life.” This testimony underlines the daily obstacles faced by PF patients and the constant struggle of managing their needs. Is there more that can be done to assist them to navigate their daily lives with equitable #OxygenAccess? #PFMonth #CurePF #BreathingLife

Dr. Francesco Bonella, EU-PFF Scientific Advisory Board Vice Chair, highlights challenges faced due to varying insurance contracts with device companies: "There are sometimes really, fights with companies in order to prescribe the better device for our patients because we know the patients, and the companies don’t." He further emphasises the importance of creating more informational materials for patients, empowering them to contact the company directly if they believe the device provided is inadequate or unsuitable for their situation. All of us can work towards better support and communication in ensuring #PulmonaryFibrosis patients get equitable #OxygenAccess. #PFMonth #BreathingLife #CurePF

💡Today on #PFMonth, we have Pt. 2 of EU-PFF Board Member Gottfried Huss's perspectives on how HCPs can help support equitable access to supplemental oxygen. If you missed Pt. 1 yesterday, be sure to check it out first!   𝗜𝗺𝗽𝗿𝗼𝘃𝗶𝗻𝗴 𝗦𝘂𝗽𝗽𝗹𝗲𝗺𝗲𝗻𝘁𝗮𝗹 𝗢𝘅𝘆𝗴𝗲𝗻 𝗔𝗰𝗰𝗲𝘀𝘀 𝗳𝗼𝗿 𝗣𝘂𝗹𝗺𝗼𝗻𝗮𝗿𝘆 𝗙𝗶𝗯𝗿𝗼𝘀𝗶𝘀 (𝗣𝗙) 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀: 𝗜𝗻𝘀𝗶𝗴𝗵𝘁𝘀 𝗳𝗼𝗿 𝗛𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲 𝗣𝗲𝗿𝘀𝗼𝗻𝗻𝗲𝗹 (𝗛𝗖𝗣) (𝗣𝘁. 𝟮/𝟮) – Gottfried Huss   ➡️HCPs must dispel myths and unreasonable fears about supplemental oxygen. Outside hospitals, the dangers of oxygen therapy are minimal. Toxicity occurs only with artificial ventilation in chronic obstructive pulmonary disease (COPD) patients. For PF patients, supplemental oxygen at home is safe and beneficial. Fixed oxygen flow rates may be inadequate during exercise, requiring adjustments based on needs and saturation levels. Patients often hesitate to increase the flow, leading to underdosage. Oxygen is not addictive, contrary to some fears. It is a natural resource, not a toxic substance. As PF progresses, increased oxygen may be necessary, leading to dependency due to disease advancement. While there is a fire risk associated with oxygen, especially for smokers, oxygen itself does not burn. ➡️Sleep disturbances negatively affect the well-being of PF patients. Obstructive sleep apnoea (OSA), characterised by airflow interruption during sleep due to repetitive pharyngeal narrowing and collapse, is seen in up to two-thirds of PF patients². The need for continuous positive airway pressure (CPAP) treatment, with or without nocturnal oxygen, can only be detected by polysomnography - continuous overnight monitoring of oxygen and other vital signs. This diagnostic method is not widely available and is infrequently offered to PF patients. Since pulmonologists receive training in sleep disorders, polysomnography should be more frequently provided to PF patients, an issue that should be addressed by pulmonologists.   ➡️Skilled respiratory and oxygen nurses must be available to counsel patients and to guarantee proper handling of oxygen devices. Nurses within hospitals and those working with oxygen delivery firms should have the skill to explain oxygen use in institutions, at home and in the ambulatory exertional mode. There are a few training modules for respiratory therapy and oxygen therapy in some countries. The training for oxygen specialised nurses is not widespread and their availability for lung patients is rather sparse. 2.  Lee JH, Jang JH, Park JH, Lee S, Kim JY, Ko J, Jung SY, Kim DW, Hong S, Jang HJ. Prevalence and clinical impacts of obstructive sleep apnea in patients with idiopathic pulmonary fibrosis: a single-center, retrospective study. PLoS One. 2023 Sep 26;18(9). doi: 10.1371/journal.pone.0291195. PMID: 37751461; PMCID: PMC10522004. (End of Pt. 2) Share your thoughts on how we can further ensure equitable #OxygenAccess in the comments below! #BreathingLife #CurePF