Professor Marc Humbert is a specialist in rare lung diseases and the current President of the European Respiratory Society (ERS). On 28-29 June 2022, he will host the International Respiratory Coalition (IRC) Summit on behalf of ERS.
With the first ever International Respiratory Coalition (IRC) Summit on 28-29 June, we spoke to ERS President Prof. Marc Humbert to learn more. He tells us about the summit and how patients can get involved with the IRC. We also learn about the future of rare diseases and how the pandemic may have strengthened the lung health community.
I am a Fellow of ERS, member of Assembly 13 on pulmonary vascular diseases and current President of the Society. I was the Chief Editor of the European Respiratory Journal from 2013 to 2017 where I am currently Section Editor in charge of pulmonary hypertension and pulmonary vascular medicine. In my home country, I am a Professor of Respiratory Medicine and Director of a large Pulmonary Hypertension research laboratory at the Université Paris-Saclay.
I am deeply involved in rare respiratory diseases research, education, advocacy and care as Director of the Department of Respiratory and Intensive Care Medicine, Pulmonary Hypertension Reference Centre, French Network of Rare Respiratory Diseases (RespiFIL) at Hôpital Bicêtre (Assistance Publique Hôpitaux de Paris) in Le Kremlin-Bicêtre (France). Since 2017, I am the vice-coordinator of the European Reference Network for rare and low prevalence respiratory diseases (ERN-LUNG) led by Professor Thomas O.F. Wagner from the University of Frankfurt. Thanks to this rich environment and strong commitment to respiratory research and care, I have been able to publish impactful articles and guidelines on rare and common conditions such as pulmonary hypertension, pulmonary embolism, severe asthma and COVID-19. Clarivate Analytics listed me as one of the world’s highly cited researchers in the field of Clinical Medicine.
Most of us take breathing for granted. People living with long-term respiratory diseases do not. They often struggle to breathe and doing any kind of activity can be difficult. When the disease is rare, patients and their families face even more challenges. They need to be supported by a strong network to obtain a timely diagnosis and appropriate care. Indeed, earlier diagnosis usually translates into better outcomes. For example, Pulmonary Hypertension Association Europe (PHA Europe) has recently highlighted that early diagnosis of pulmonary arterial hypertension reduces both the physical damage and the impact on quality of life.
To offer the best care, people with rare respiratory diseases need expert centres close to where they live. These centres need to have multidisciplinary medical teams who are trained and experienced in the diagnosis and treatment of these conditions. This will ensure that the right treatment is provided to the right people.
It is critical to support research for rare respiratory diseases to discover innovative approaches until a cure is found.
People living with rare respiratory diseases must be empowered and their voices amplified by patient associations to shape the creation of healthcare policy. They must also have access to the support that rare respiratory disease networks and patient associations can offer.
Finally, psychosocial support must be easily accessible so that people are supported through very difficult times in managing the impact on their lives. Rare respiratory diseases networks such as the ERN-LUNG and RespiFIL are key instruments supporting patient care in Europe, in close partnership with all stakeholders.
The lung community has been on the frontline during the last couple of years and it should definitely be stronger and more prominent after the COVID-19 pandemic. Approximately 600 million people globally live with long-term respiratory diseases such as asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis and many rare and severe respiratory diseases. The outbreak of COVID-19 led to increased healthcare capacity focused in the respiratory field, but at the same time patients with various long-term conditions faced limited access to essential health services. The COVID-19 catastrophe can be a starting point for change in healthcare systems. The post-pandemic phase will be a unique opportunity to foster progress in the field of respiratory medicine and care.
The UN sustainable development goals state that death from noncommunicable diseases (diseases that are not passed from one person to another) such as long-term respiratory diseases should be reduced by 1 in 3 by 2030. In the post-pandemic world, we need to speed up actions on this front that have been delayed by the pandemic. To help achieve this target and make the most of the increased awareness of respiratory infections due to COVID-19 the IRC has been launched by ERS with:
The IRC is a new partnership to transform post-pandemic respiratory healthcare, to support people living with long-term respiratory diseases, and to better ready ourselves in case of future pandemics. Improving respiratory care must be central to government and healthcare systems’ post-pandemic recovery plans. To that end, the Coalition aims to support the creation of ambitious, national-level respiratory strategies based on best practices and promote building resilience in managing pandemics.
The patient role is essential. In a coalition such as IRC, all partners have a prominent role and they do share the same ambition. The patients’ perspectives are key for the development of the IRC. The patients’ contribution to respiratory research, advocacy and care is of paramount importance. The example set by rare diseases and the strong support gained from the European Commission for cross-border patient care and patient-centric approaches show that the launch of the IRC is timely. Our Coalition should have a unique opportunity to promote best standard of respiratory care and prioritisation of national respiratory plans in many countries.
