To say 2020 has been a challenging year for all is an understatement. For the @EFA_Patients community especially, who are some of the most vulnerable to the coronavirus, this year has posed serious risks to our physical and mental health.
But we are a strong and resilient community. Our members have been vital in supporting at-risk patients with respiratory illnesses and allergies. We cannot thank them enough for their dedication and efforts to fill the gaps in information, provide practical advice and psychological support to patients and their families during this time. At EFA, we ensured a strong presence at the European level, highlighted the real situation of patients we represent and relayed information from the European agencies and institutions on the pandemic and vaccines progress.
Although we have not been able to meet in person for a whole year, we have nevertheless remained closely connected. Through digital means and emerging technologies, we have met and advocated for change for all people with allergy and airways diseases, this time from our respective homes across Europe. EFA delivered its annual capacity building programme, hosting a digital Allergy and Respiratory Patient Conference with great participation as well as a Meet & Greet with the EU session. Additionally, we offered targeted trainings to help our members develop organisational capacity, stay up to date on the latest developments in policy and present them with advocacy tools.
For one of our flagship initiatives, we organised the adoption of the BREATHE Vision for 2030: a set of goals by the newly established European Lung Health Group. This group consists of European patient groups and medical societies that we helped build and coordinate in order to, for the first time, collaborate for better respiratory health care and protection of our lungs at European level. I participated in all preliminary meetings for the group until its creation, and I can say with confidence that there is more than an appetite to work together to get the attention lung health and respiratory disease deserve.
EFA also prioritised the creation of the European Allergy and Asthma Youth Parliament, formed in 2020 to help create the next generation of leaders in health. At the end of December, EFA was proud to publish and launch the Youth Parliament’s Policy Recommendations: an advocacy tool to push for policy change to accommodate the unique needs of young people. I was proud to speak at the event and hear about the experiences of the Youth Parliament members.
EFA has also continued its work advocating for patient-centred care in EU policy. This work is evidenced by the growth of the European Parliament Interest Group on Allergy and Asthma, and by our participation in policy consultations, such as the Pharmaceutical Strategy for Europe and the F-Gases Regulation, where we centred patients’ needs and experiences.
As the EU increases its dedication to health prevention through initiatives such as the European Health Union, it is paramount that we represent patients at every step. This past year, EFA continued bringing the voice of patients to preventative policies such as Europe’s Beating Cancer Plan, the Air Quality Fitness Check, the Climate Change Adaptation, the Renovation Wave, the Construction Products Regulation, and the Farm to Fork Strategy, all important files for patients that we will continue to follow.
As our meetings transitioned online, so too did our campaigns. Our World Atopic Eczema Day campaign, coordinated with Global Skin, showed how digital tools can be utilised to tell the stories of patients, caregivers, and healthcare workers. Through podcasts, videos, and a social media campaign in many languages, our 2020 message of “How do YOU care for atopic eczema?” resonated with many people around the world.
The rise of digitalisation was also reflected in healthcare. EFA has for a while now followed developments in digital healthcare closely and advocated for a patient-centred approach to developing new technologies for managing healthcare, promoting self-management, and protecting personal data. To that end, we contributed to the European Data Space consultation.
Apart from our own initiatives, EFA was committed to the inclusion of patients in a number of EU projects throughout 2020. The CURE asthma project enjoyed an increase of followers, for which EFA led the communications. In 2020 the ImmUniverse project was launched, where EFA brought the patient voice to research into management of inflammatory diseases such as atopic eczema. EFA also remained a partner in 3TR, which sets out to improve our understanding of personalised treatment for allergic and inflammatory diseases, including asthma and COPD. Regarding the food allergic community, EFA followed the work of the FAO/WHO Codex Alimentarius Commission and Committees as an Observer, giving input into several files.
We give our warmest thanks to EFA members, EFA sustainable corporate partners, the European Commission, our partner organisations and patient experts for your support and commitment to delivering the European allergy and respiratory patient voice this past year. We look forward to continuing our work on patient advocacy with you.
While 2020 was marked by the global pandemic, we hope that 2021 will be the year when we look forward to a safer and healthier world, where the wellbeing of patients with allergies, asthma and COPD will be considered and prioritised across Europe.
Let’s stay strong and connected; we wish you a safe and healthy year ahead,
Mikaela Odemyr