EFA

Together with the European Lung Health Group, EFA advocates for better lung health in Europe through the #KeepBreathing campaign. Now you can show your support to asthma and COPD health on Instagram! The yellow #KeepBreathing lungs are accessible on your smartphone. Follow EFA on Instagram, take a shot with a new filter and share it with your network!

The #KeepBreathing campaign is a joint advocacy effort of the European Lung Health Group (ELHG), nine European level patient and healthcare professional organisations, gathering 179 national associations in 36 countries together for better lung health policy in Europe.

Together, we aim to bring lung health to the forefront of European advocacy discussions and call for action across three areas: prevention, care and research for respiratory diseases in Europe.

Want to learn more?

Read more on breathevision.eu and follow us on X (@EuroLungHealth) and LinkedIn (@European Lung Health Group).

How can you support our action?

Download the #KeepBreathing Handbook and use the #KeepBreathing hashtag on socials! Take a photo with our new filter on Instagtram.

The European Lung Health Group is actively working together for better lung health in Europe through better care, increased patient participation, and improved prevention. More information here.

EFA has been elected to become a member of the newly launched European Critical Medicines Alliance, a European Commission initiative to address, reduce and react against medicine shortages in the EU which are far too often a daily challenge for allergy, food allergy, atopic eczema, asthma and COPD patients in Europe, despite the prevalence and impact of these diseases. 

The alliance is embedded into the European Commission’s Health Emergency Preparedness and Response Authority (DG HERA) as part of the European Health Union, and is set to bring together all relevant stakeholders to strengthen cooperation and identify the challenges, the priorities for action and possible policy solutions to the issue of shortages of critical medicines in the EU. 

The launch of the Alliance is part of the roadmap the European Commission announced in October 2023 to address medicines shortages in the EU. The Alliance will be closely looking at the final Union list of critical medicines, elaborated by the European Medicines Agency (EMA) in December 2023. The list of critical medicines prioritises the medicines for which shortages should be avoided. The first list draft is planned to be reviewed this spring as well, with an updated version expected to be published in December 2024. 

EFA’s appointment is for a five-year term, and the work is expected to start in spring, with its first recommendations on actions to be taken to improve the supply of critical medicines to be published by autumn 2024.

EFA is looking forward to working together with our community, bridging their needs and expertise with the EU institutions and all the stakeholders across the supply chain to guarantee timely access to medicines for patients in the EU and beyond. 

EFA co-signed a letter to strengthen health and environmental needs in the EU detergents regulation, currently under review. The letter, proposed by the Environmental Coalition on Standards (ECOS), brings together 17 EU-level environmental and health NGOs to urge the European Parliament to adopt safer detergents which minimise the harmful impacts on human health and the environment.

A group of 17 NGOs wrote to the European Parliament’s health and environment committee (ENVI) with recommendations for the ongoing revision of the EU Detergent Regulation. EFA is a signatory of the call as the revision of the regulation should strengthen the requirements for detergents, battle against hazardous chemicals and, all together, minimise the harmful effects on human health and the environment. 

Detergents, skin and airways 

Chemicals in everyday products, such as detergents, can be harmful when in contact with the skin or inhaled through mouth and nose. 

People with contact dermatitis or respiratory conditions are particularly vulnerable, as they may face immediate symptoms such as red rushes, itching, blisters, cracking or a burning skin, watery eyes, airway irritation or even asthma-related reactions. 

Safer detergents for all 

The co-signatories of the letter addressed to the members of the European Parliament Committee for the Environment, Public Health and Food Safety (ENVI), to put together a set of priorities moving forward with EU legislation, calling for the adoption of the ENVI report at the committee vote. 

Jointly, we asked for the minimisation of the use of hazardous chemicals in line with the EU’s Zero Pollution ambition. EFA stressed that a coherent detergent revision would support the EU’ One Health approach, which recognises the interconnections between the environment and human health.

Following the joint letter, the ENVI report was adopted with broad majorities both from the ENVI Committee and the Plenary session that took place two weeks later. Once the Council reaches its own common position, the two institutions will engage into trilogue negotiations to give the updated regulation its final shape.

Read the full letter here.

In March, EFA submitted a response to a consultation by the Codex Alimentarius Commission (CAC), the WHO/FAO body setting food standards globally. The consultation seeks to evolve on two key issues for the food allergy patient community: the revision of the allergen-related provisions of the General Standard for the Labelling of Prepacked Food (GSLPF) and the development of guidelines for the use of Precautionary Allergen Labelling (PAL).

The General Standard for the Labelling of Prepacked Food (GSLPF) is the global standard providing the basic principles for the labelling of prepackaged food globally, including allergen labelling. En revanche, future guidelines on Precautionary Allergen Labelling (PAL guidelines) is the first attempt to develop global rules for informing consumers about the unintended allergen presence in specific foods. PAL remains a voluntary information statement in most countries and regions, including in the EU.

To respond to the Codex consultations, EFA organized several community calls with our Food Allergy Working Group to discuss the proposals and reflect the European level perspective on food labelling. The joint consultation paper is expected to influence key aspects of allergen labelling policies in the EU and internationally.

EFA is an observer to Codex since 2019 and a member of the Committee on Food Labelling (CCFL) and the Committee on Food Hygiene (CCFH).

GSLPF revision: towards global principles that further improve food allergen labelling

Definition of ‘food allergens’ introduced!

EFA applauds the proposed introduction of a ‘food allergen’ definition, as the reference to both ‘foods and ingredients’ captures well the range of food allergens that exist.

Clear and readable information is a must

However, EFA strongly opposes any kind of flexibility in the obligation to provide clear information on the presence of allergens in a food product, maintaining that allergen information should not only be mandatory but also clear i.e. in a distinct font type, style or colour.

No more hiding – ‘allergen statement’ should go in the ingredient list

EFA supports the use of separate statements for allergens. We propose an obligatory ‘Allergen Statement’ containing all relevant information (e.g. allergen ingredients, PAL and allergen risk assessment). For the convenience of consumers with food allergy, such statements must be placed directly next to the ingredient list.

PAL Guidelines: allergy patients need a mandatory and harmonised PAL!

EFA has been advocating for the needs of food allergy patients throughout the development of the first framework of rules on the largely unregulated area of precautionary allergen labelling (PAL). Acknowledging the need to balance between patient safety and ensuring food choices, the EFA food allergy patient community highlighted several key points.

PAL must become a mandatory food labelling based on a risk assessment

A mandatory PAL will reduce uncertainty around the risks posed by a given food product while increasing consumer trust in foods. Reality has shown that oftentimes PAL is incomplete, with patients reacting to allergens not mentioned on the label but that could have been detected through a risk assessment.

Patient representatives prefer using reference dose ED05

In one of the central issues of the consultation, EFA made clear that reference doses for food allergens should be calculated based on eliciting dose 05 (ED05).

Although ED01 would in theory protect 99% of food allergy patients, there are well-founded concerns by both scientific and patient experts that it would lead to a proliferation of PAL statements. At the same time, health outcomes in terms of anaphylaxis remain extremely low even in an ED05 scenario, as recent studies demonstrate.

EFA stresses that ED05 strikes the right balance between safety information for food allergy consumers while safeguarding their food choices. In this regard, all stakeholders should invest in communicating the right message and making sure that consumers are properly informed.

‘May contain’ – PAL wording

EFA addresses the attention to the fact that there should be a harmonised PAL wording across the globe. Among other wordings such as ‘may contain traces of...’ and ‘not suitable for people allergic to X’, EFA prioritises ‘may contain’ as the least bad option from a food allergy patient perspective, given that it is currently the most common and the most recognisable wording. This is why we suggest to establish an ‘Allergen Statement’, including PAL among other allergen-related information.

You can access EFA’s full response to the joint consultation here.

The European Parliament and the Council have reached a preliminary agreement for a clean air law that sets new standards to protect people’s health. Despite the future law falling short in aligning with the latest scientific science, the directive, if voted before the European elections, foresees better public information, access to justice and compensation for health damages. Read on!

Last month the European Parliament and the Council reached a provisional agreement on the revision of the EU Ambient Air Quality Directive - one of the key policy pillars governing the quality of air we breathe. The agreement is a culmination of a three-month intense negotiation among the co-legislators, marked by differing positions on certain legislative aspects that were, at times, hard to overcome.

All along the revision process, EFA has worked both independently and in collaboration with other EU-wide health organisations, such as the Health and Environment Alliance (HEAL) and the European Respiratory Society (ERS), advocating for an ambitious revision of the directives that reflects latest scientific evidence and ensures healthy air in Europe.

Although not all calls have been taken on board adequately, EFA welcomes the agreement as a solid step towards cleaner air for all people living in Europe.

In the agreement on the revised Ambient Air Quality Directive, EU policymakers recognised the vital need to reduce air pollution in line with scientific recommendations.

However, the institutions have stopped short of fully aligning the law with the World Health Organisation’s (WHO) recommendations and have also included a mechanism that could allow Member States to delay complying with the new standards until 2040.

From the perspective of patients living with allergy, asthma and COPD, we have focused, in particular, on the following aspects:

EU new legislation will fall behind WHO recommendations

In the agreement on the revised Ambient Air Quality Directive, EU policymakers recognised the vital need to reduce air pollution in line with scientific recommendations.

However, there is no full alignment with the WHO recommendations, nor a clear timeline for it. The institutions have stopped short of fully aligning the law with the World Health Organisation’s (WHO) recommendations and have also included a mechanism that could allow Member States to delay complying with the new standards until 2040.

On the positive side, there are provisions establishing a regular review mechanism, starting from 2030 and every five years thereafter, for legislative updates based on the ’latest scientific evidence’. This avoids having to reconduct a full legislative process to modify some thresholds or pollutants in the directives.

Improved public information on air quality

A very positive step forward is the agreement to establish EU requirements for improved public information on air quality. Information will take the form of national Air Quality Indices disseminating real-time information. The directive will require that indices including advice for vulnerable groups, a long term ask of EFA, as well as information thresholds for all pollutants.

Access to justice and compensation for health damage from air pollution

The agreement also maintains the European Commission proposal to specifically reinforce  access to justice for exposure to air pollution.  This will allow citizens and legal entities such as patient groups to start legal procedures in the event of health damage due to air pollution. Moreover, people in the EU will now have the right to claim and obtain compensation for health damages as a cause of a violation of national air quality rules.

Clean air future – we must act now!

EFA calls for the conclusion of the revision process, which still requires the approval of both the EP Plenary and the Council of Ministers. We have joined forces with seven other health organisations in a letter addressed to EU environment ministers and MEPs calling for the adoption of the provisional agreement as soon as possible, before the June European elections.

Meanwhile, EFA is looking forward to starting working on another process launched on a key file related to air quality, which is the evaluation of the National Emissions Ceiling Directive (NEC).

EFA attended the "Research Perspectives on the Health Impacts of Climate Change", the first European Conference organised by the European Commission Directorate General of Research & Innovation (DG RESEARCH). The climate crisis is a health crisis, especially to our community, and must be addressed with equal focus and attention to human health and the co-benefits for health, especially allergy and lung health.

From left to right: EFA representatives, Agata Papotto and Panagiotis Chislaridies at the Climate Change and Health Research conference. Maria Neira, WHO Director, Public Health, Environmental and Social Determinants of Health and Panagiotis Chaslaridis. 

On 19-20 February 2024, EFA attended the "Research Perspectives on the Health Impacts of Climate Change" conference in Brussels, organised by the DG Research & Innovation of the European Commission. The conference was very timely given EFA’s new Climate change programme 2023-2025. 

Climate change poses significant threats to public health around the world. Rising temperatures, extreme weather events, poor air quality, and other impacts of climate change directly harm human health. However, the importance of this impact is often overlooked, as climate adaptation falls back to become an urgent policy priority, focused mostly on climate change mitigation. However, a climate emergency is a health emergency already affecting people with allergy and respiratory diseases.

The discussion brought together different stakeholders including EU policymakers, WHO representatives, researchers and organisations to reflect on the research needs in the field of climate change and human health with a mission to build an inclusive research and innovation agenda. 

At the conference, EFA brought the allergy and lung health patient perspective to the discussions on the health risks of climate change. 

Climate change is a health threat 

All speakers and attendants agreed - climate change is a health threat. Science has shown that the health impact of climate change has become an undeniable reality. Climate-driven hazards such as heatwaves, air pollution, water scarcity, and food supply problems increase deaths and disease in the EU and globally. 

Around, 8.5m out of 13.7m deaths caused by the environment are the result of non-communicable diseases. What’s more, EFA also highlighted the health effects of increasing pollen, mainly driven by the ever-warming planetary conditions.

One health approach to tackle climate change 

To reverse the threats posed by climate change, the EU cannot afford to prioritise mitigation over adaptation, but needs to work on both fronts with equal focus, and with special attention to human health and the health co-benefits. 

Fostering public understanding of the climate risks is key in raising public pressures for responsible policymaking, as implementation is often low. It is important that the scientific world as well as all communities related to One Health, engage strongly with policymakers.

Action on climate and health 

Speakers also made several urgent pleas, calling for more interdisciplinary research and highlighting the need to break silos and bring together the climate and health policymakers, researchers and stakeholder communities such as EFA. This approach is expected to be reflected in the upcoming EU Climate Risk Assessment (EUCRA), offering a preliminary guide of assessing risks including health and other systems affected by climate.

More information about the conference can be found here.

As part of the Capacity Building Project, EFA is organising an online Meet & Greet with the EU training session on ‘Patient involvement in clinical development: practical implications for meaningful engagement’ on 23 April 2024. Register here

EFA is delighted to invite you to attend the next EFA Meet & Greet with the EU training session, taking place online on 23 April 2024.

This year EFA is organising an online Meet & Greet with the EU training on ‘Patient involvement in clinical development: practical implications for meaningful engagement’, aiming at facilitating patients’ access to research and clinical trials as well as provide the EFA Members community with practical knowledge on the new EU guidance on Good Lay Summaries.

The Meet & Greet with the EU event will have a particular focus on decentralised clinical trials, to increase patients’ access, and the new EU guidance on Good Lay Summary Practices, an essential tool to facilitate the understanding of complex medical information for patients and general public. This with the aim to have a meaningful patient involvement in research as participant and partner.

Join us and get ready to expand your knowledge on patient engagement in research by learning more about the latest trends and practical skills. Discover the agenda here!

When? 23 April 2024 

Where? Online

How to join? Register here 

IMPORTANT: The event is reserved for EFA Members, other patient organisations representing those living with respiratory or allergic diseases, EFA European Allergy and Asthma Youth Parliament members.

The European Lung Health Group comes together in Brussels to launch the #KeepBreathing campaign and discuss opportunities for better lung health in view of upcoming European elections. Learn more about the campaign.

The ELHG meeting in Brussels in February 2024. 

The European Lung Health Group (ELHG), an informal grouping of patients and healthcare professionals’ organisations representatives, met in Brussels at the end of February to mark the launch of their  #KeepBreathing campaign. This is a multiannual, multistakeholder advocacy effort to reduce fragmentation of knowledge and policies around lung health at the European level. The campaign is being coordinated and funded through EFA’s was launched under the coordination of EFA’s BREATHE Vision for 2030 project.  

New advocacy document: “#KeepBreathing: A vision for EU action on lung health 2024-2029”  

Following the launch of its new publication “#KeepBreathing: A vision for EU action on lung health 2024-2029”, in the context of the #KeepBreathing campaign for lung health, the nine ELHG member organisations, including EFA, celebrated the launch of an EU action on lung health, laying out immediate actions in three areas offering sustained, focused and achievable actions to develop EU policies which are coherent for lung health: prevention, care, research & innovation.  

Discussions at the Parliament: MEP Lung Health Group online event and press release   

The launch of the #KeepBreathing vision was supported by the MEP Lung Health Group, who have discussed the opportunities for better lung health at the European level, especially in the context of the upcoming European elections in an online event earlier in February. The event was hosted by the co-chair of the MEP Lung Health Group, MEP Tomislav Sokol (Croatia/EPP), with the participation of MEP Radka Maxová (Czechia/S&D) and MEP Stelios Kympouropoulos (Greece/EPP), introductory remarks by Dr Eva Polverino (European Respiratory Society) and Marcia Podestà (European Federation of Allergy and Airways Diseases Patients’ Associations). Following the event, the ELHG also published a press release, with the MEPs’ concerns over EU budget cuts to health resources and its effects on lung health. 

High-level discussions on lung health with key EU policymakers  

With the occasion of the ELHG organisations present in Brussels, a high-level meeting took place in the presence of various relevant policymakers and the participation of the representatives from the European Commission. We reinstated the commitment of the respiratory community to collaborate with the European Commission, the relevant EU agencies, and the Member States, to better protect and prepare citizens’ lung health, and to realise this vision of a healthier and stronger Europe. During this meeting, EFA’s board member, Christine Strous, put forward points related to the importance of healthcare systems sustainability and strengthening in the context of preparedness and response for the next respiratory crisis, important for the respiratory community.  

Join the #KeepBreathing campaign!  

Share the campaign with your network, and make use of targeted messaging of Keep Breathing vision: prevent, healthcare, research & innovation. Follow the ELHG for more updates on the social media channels: 

• Twitter/X: @EuroLungHealth 
• LinkedIn: @ European Lung Health Group 
• Website: www.breathevision.eu  

On 8-9 April, representatives of patient organisations from all over Europe will convene in Stockholm for EFA’s Annual General and Community Meeting 2024.

EFA Annual General Meeting & Community Meeting 2024 is fast approaching. This year, the EFA members community will come together in Stockholm (Sweden) on 8-9 April 2024 for two vibrant days of discussions. The AGM 2024 is hosted by two EFA Members in Sweden – Swedish Asthma and Allergy Association and Swedish Heart and Lung Association.

Our AGM and Community Meeting 2024 will be a unique opportunity to discuss the impact of our communities and explore improved collaboration for the future. The Community Meeting 2024 will revolve around the theme “Partnership for Empowerment and Leadership” where patients with allergies, atopic eczema, asthma and COPD are at the core. The theme and programme was co-created by EFA Members Meeting Committee.

We are thrilled to announce that the Swedish Minister of Healthcare, Acko Ankarberg Johansson will be opening the meeting with welcoming words.

EFA partnerships from EUPATI, Global Skin, and our sustainable corporate partners will join to share best practices, and debate with our community patient leaders on partnership.

Download the agenda here

Lung health is a determining factor in overall societal health. In the EU, respiratory diseases remain Achilles heel - a huge burden on patients, healthcare systems and the economy. Together with the European Lung Health Group, EFA launched the #KeepBreathing campaign in view of the upcoming European election to call on EU policymakers for a coherent approach to lung health policy in an MEP Lung Health Group Event - “KeepBreathing: A vision for EU action on lung health 2024-2029”. Read our new publication. 

On 21 February 2024, the European Lung Health Group, nine European-level patient and healthcare professional organisations, held an online event “KeepBreathing: A vision for EU action on lung health 2024-2029” to address the need for a coherent lung health policy in Europe with the participation of Members of the European Parliament - Tomislav Sokol (Croatia, EPP), Radka Maxova (Czechia, S&D) and Stelios Kympouropoulos (Greece, EPP).  

#KeepBreathing: an opportunity for better lung health in the EU 

In the EU, 1 in 8 deaths are caused by lung diseases and the numbers are rising. But the strain of lung diseases expands well beyond its impact on patients’ lives, it is a burden for healthcare systems and society. The total cost of poor lung health in Europe is estimated at 611 billion EUR.  

“Despite the increasing burden of respiratory diseases due to aging, the impact of climate change and pollution, as well as risk of viral pandemics, however, there are limited resources, and reduced budget for research, as well as for prevention and healthcare”, explains Dr. Eva Polverino, Director of Scientific Relations from the European Respiratory Society (ERS) in her presentation.  

“Lung health, in the three key areas of prevention, care and research, requires attention and investment. 9 in 10 Europeans consider respiratory diseases to be a serious problem in their country,” stated Marcia Podestà, EFA President in the welcoming message.  

For these reasons, the need to tackle poor lung health in a targeted, collaborative, and resourced action on lung health in Europe has never been more urgent.  

The time is now for a lung health policy that helps Europe to #KeepBreathing   

The panel discussion revolved around the opportunities for better lung health, giving the floor to MEPs Tomislav Sokol, Stelios Kympouropoulos and Radka Maxová to voice their vision on the action the EU should undertake to address lung health.  

MEP Tomislav Sokol touched on the different areas related to lung health, bringing up the EU health budget, pharmaceutical legislation, tobacco prevention and general care for patients living with respiratory diseases - “At the European Parliament, we should give more priority to health by having a permanent fully-fledged health committee, to coordinate all initiatives on health and raise the profile of health at the Parliament level, in the upcoming mandate.” 

MEP Stelios Kympouropoulos reiterated the need to focus on the full spectrum of diseases falling under lung conditions while addressing prevention, healthcare and resources – “In the next mandate, we should focus on increasing the resources dedicated to lung health across prevention, care, research and innovation.” 

MEP Radka Maxová spoke about lung health in the context of the COVID-19 pandemic – “We need to prioritise lung health to ensure the healthcare systems and society are prepared to respond effectively to future respiratory challenges, building an overall public health resilience.” 

#KeepBreathing: A vision for EU action on lung health 2024-2029  

In the closing, MEPs Stelios Kympouropoulos and Radka Maxová focused on the need to prioritise an overall strategy to address lung health in Europe in a view of upcoming European elections. This has reinforced the recommendations previously expressed by MEP Tomislav Sokol, to have a permanent fully-fledged health committee at the European Parliament in the new mandate, that focuses solely on health rather than combined with environmental issues. 

The #KeepBreathing campaign urges policymakers to take action across three key areas – prevention, care and research – under the next EU mandate. A strong policy towards lung health will improve and save millions of lives, lessen the strain on Europe’s ailing healthcare systems, and better prepare the bloc for future health crises. 

Read the new policy brief “#KeepBreathing: A vision for EU action on lung health 2024-2029”.  

Read the press release. 

Learn more about the European Lung Health Group here. 

Poor indoor air quality impacts everyone, but especially our community; people with respiratory diseases and other underlying health conditions including allergy. EFA was a guest speaker at a policy event on Indoor Air Quality organised by the ventilation industry association (EVIA), where we brought to the table the perspective of patients with chronic respiratory conditions.

Europeans spend 90% of their time indoors. But did you know that indoor air can be 2-5 times, even up to 100 times, more polluted than outdoor air? 

On 15 February, EFA was invited to participate in the policy event ‘Breath of Change – Elevating Indoor Air Quality in European politics’, organised by the European Ventilation Industry Association (EVIA) in Brussels.  

The panel discussion gathered an interesting line-up of speakers, including representatives from the European Commission’s Directorate General for Energy (leading the revision of the EU Energy Performance of Buildings Directive (EPBD), which includes provisions for ventilation indoors), regional authorities, technical ventilation experts, as well as the ventilation industry and EFA.  

 Why indoor air quality is important in Europe 

The quality of the air we breathe indoors defines our lung health and general health status. EFA brought the perspective of vulnerable groups such as chronic respiratory and allergy patients into the expert debate about IAQ. We highlighted what can the EU do to improve the air quality indoors and the role of ventilation mechanisms and technologies.  

In the discussion, EFA emphasised the role of IAQ as a health determinant, and therefore the fundamental need to ensure healthy air in indoor spaces. Indoor environments are often polluted with harmful substances for health which altogether also might lead to a cocktail effect composed of allergens, mould, dust, chemicals from cleaning products, emissions from heating/cooking and construction materials, furniture or tobacco smoke.  

The presence of harmful particles, polluting volatile and agents affects disproportionately certain vulnerable groups such as children and patients with chronic respiratory conditions and allergy. What’s more, there are strong socioeconomic links around poor IAQ, as low-income households usually cannot have access to clean energy sources and ventilation.  

 EFA’s contribution to cleaner air indoors  

Since our creation in 1991, EFA has worked across the policy spectrum advocating for improved IAQ at the EU/Europe levels. We are vocal in calling for better access to information on indoor pollution levels, healthy requirements for construction products, and more ventilation-oriented financing of renovations.  

EFA works on IAQ also in the context of the SynAir-G project, which is part of a larger cluster of EU-funded research projects known as the IDEAL Cluster. SynAir-G aims to improve understanding of the main sources and interactions of chemical and biological indoor air pollutants in schools, to develop user- and environmentally friendly solutions and interventions with a particular focus on vulnerable populations, and disseminate the generated knowledge and interventions to key stakeholders. where further synergies will be identified. More information about the SynAir-G project here.

Ventilation also plays an important role to IAQ. EFA has been consistently asking for a legal, science-based definition for ventilation, but also for better information on ventilation rates indoors, through the adoption of indicators that are communicated to the public in indoor space categories, such as schools and malls.   

EFA Community considers the role of the EU in enabling action on IAQ as key, and works continuously to ensure IAQ issues affecting patients are listened to, ultimately calling for policy change addressing air quality indoors. 

Download the full EFA presentation at the EVIA event here.  

Lung health is fundamental for a healthier, stronger and more resilient society in Europe. However, respiratory disease, including asthma and chronic obstructive pulmonary disease (COPD), remains Europe’s Achilles heel - a significant burden to patients, healthcare systems and to society. Together with the European Lung Health Group (ELHG), EFA is calling on EU policymakers to address lung health in an all-round, multidisciplinary approach in a new publication – “#KeepBreathing: A vision for EU action on lung health 2024-2029”.

Our breath, and our lungs, are fundamental to a functioning human body and life. In fact, our lungs work hard to keep us alive, breathing 12 to 15 times a minute, translating to 22,000 breaths a day and more than 6 million breaths a year. But for some of us, breathing is more challenging than we can imagine - 87 million lives in the EU are impacted by lung disease. This is why the patients and doctors organisations of the ELHG are asking to prioritise action on lung health across the EU: our policy is to #KeepBreathing.

Breathing new life into EU lung health policy

The total societal cost of poor lung health in Europe is 611 billion EUR. Action for healthy lungs is crucial in improving the overall well-being of the population in the EU. Around 1 in 8 deaths in the EU was due to a respiratory disease. Improving lung health is one of the most effective ways of alleviating the strain on EU health systems, improving quality of life, and stimulating the EU economy.

Diseases of the lung and the respiratory system can be highly debilitating, affecting life as a whole and leading to co-morbidities such as cardiovascular disease and obesity.Having healthy lungs means we can breathe, work, and play and finally - be better prepared for future health crises.

Better lung health and addressing the challenges of tomorrow

Together with the European Lung Health Group (ELHG), EFA launches an EU action on lung health in a new publication: “#KeepBreathing: A vision for EU action on lung health 2024-2029” in the framework of the #KeepBreathing campaign.

The document lays out immediate actions to improve EU policy on lung health across three areas:

• On prevention, it is a pressing public health need that the EU and Member States improve air quality indoors and outdoors, commit to eradicating smoking and increase early screening rates, vaccinations and lung health checks.  
• On care, patients and healthcare professionals call for initiatives and resources to ensure early and accurate diagnosis to enable better respiratory treatment to save lives, as well as better follow-up multidisciplinary care to improve quality of life.   
• On research, there is an imperative to match the burden of lung disease with the investment it receives, moving towards well-funded, patient-centric research to enhance today’s levels of prevention and care and to discover the cures of tomorrow. 

All-round approach on lung health – calling on EU policymakers to act now

Tackling respiratory diseases, and therefore addressing lung health, relies on early diagnosis, timely intervention, and ensuring access to the right treatments. It requires a multidisciplinary approach to lung health that focuses not only on symptom management but holistic care, including strong emphasis on preventative measures such as health literacy, strengthening overall, lifelong health to prevent infection and promoting research in the most pressing challenges.

ELHG calls on the European Commission to step up its action on lung health by adopting a holistic approach – working across DGs – and by increasing its ambition through more investment, research and action.

The members of the ELHG stand ready to work with the European Commission, all EU institutions and agencies, as well as the Member States, to improve lung health for a healthier, stronger and more resilient society in Europe.

We say the time is now for a lung health policy that helps Europe to #KeepBreathing.

Read the new publication.

About the European Lung Health Group and the #KeepBreathing campaign

The ELHG is a partnership of nine European patient associations and healthcare professionals, including the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA). Lung health groups are joining forces to raise awareness about lung health, highlighting the importance of lungs in a #KeepBreathing campaign.

The ELHG advocates across three key policy areas: prevention, care, and research. Addressing them will devise coherent EU policies to ensure Europeans can #KeepBreathing, improving millions of lives, better preparing Europe for future health crises, and lessening the strain on the healthcare system.

The European Lung Health Group (ELHG) thanks EFA’s sustainable funding partners for their unrestricted educational grants which have helped the association in coordinating the work towards BREATHE Vision for 2030 and its activities: Astra Zeneca, Chiesi, and Roche. More information here.

Presentation

On the 25-26 of January, EFA was invited by the European Medicines Agency (EMA) to participate in the Accelerating Clinical Trials in the EU (ACT EU) Workshop. ACT EU aims to develop and innovate clinical research in the EU, and that is paramount for allergy, atopic eczema, asthma and chronic obstructive pulmonary disease (COPD).  

What are the common uses of clinical data in the EU? 

Over the years the EU regulatory network has been collecting data about clinical trials in the EU through clinical trial registries and instruments such as CTIS and EudraCT. However, the existing platforms do not share clinical data per se. 

There is a wealth of clinical data that is developed during trials for medical innovation across medical conditions. The information is used to support regulatory decision-making, authorising new medicines for example. It also serves to track healthcare innovation or even exploring the use of Artificial Intelligence for novel insights in the field. However, clinical data has a huge potential to improve health and extends far beyond the current scope of use.  

Data and patients – why is health data important?  

While clinical data used for trials is developed mostly to respond to a research hypothesis, there are many indicators in data of patients participating in a trial that could serve other research hypothesis, linked to severity, comorbidities, quality of life or even the connection with environmental exposure and the climate. 

The ACT EU event brought together different stakeholders including patients, researchers, industry representatives and policymakers in Amsterdam to discuss how data can be used to support and guide EU decision-makers in improving access and usability of clinical trials data. 

New uses of data – ACT EU workshop  

Making clinical data accessible across Europe and actors advance research requires a well-regulated framework and information to patients on secondary use of their health data, so that they can make informed choices. 

The ACT EU workshop served to share use cases based on access to clinical trials data, data analysis, and funding. EFA participants Isabel Proaño and Agata Papotto, pointed out the evidence gaps within the European clinical trials environment including the limited use of clinical research findings for wider population interventions, or the potential for a better analysis of the impact of vaccination and the use of antibiotics. 

The workshop provided an opportunity to get more information on how international data standardisation efforts on clinical trials led by ICH M11 are enabling new use cases and support implementation. 

A key outcome of the workshop will be a research agenda proposal by EMA that will include a prioritised list of use cases for data analysis as discussed by the different stakeholders in the workshop, including EFA.  It was a great opportunity to become part of a growing community on clinical trial analytics on the ACT EU multi-stakeholder platform.  

More details can be found here: ACT EU Clinical Trials Analytics Workshop - January 2024 | European Medicines Agency (europa.eu)

How to improve lung health in Europe? What action must EU policymakers undertake to ensure Europeans can #KeepBreathing? Join the MEP Lung Health Group webinar “KeepBreathing: A vision for EU action on lung health 2024-2029” on 21 February and learn about the new #KeepBreathing campaign on lung health – stay tuned for a presentation of a key document!

Breathing is something that we all do without usually realising it. We breathe in and out about 20,000 times a day. Having healthy lungs means we can breathe, work, and play – and be better prepared for future health crises. However, this is not the case for many people in Europe living with lung disease.

The reality is harsh: 87 million Europeans are currently living with lung disease, according to the World Health Organisation’s (WHO) report. Improving lung health is one of the most effective ways of alleviating the strain on EU health systems, improving quality of life, and stimulating the EU economy. However, the need to tackle poor lung health in a targeted, holistic manner has never been more urgent. The question remains the same: how to improve lung health for better lives of people in Europe?

KeepBreathing: A vision for EU action on lung health 2024-2029

Together with the European Lung Health Group (ELHG), EFA presents a new pan-European initiative to raise awareness about lung health – the #KeepBreathing campaign - in an online event  “#KeepBreathing: A vision for EU action on lung health 2024-2029” on 21 February 2024.

We will kick off the event with an important discussion on opportunities for better lung in the EU together with EFA President, Marcia Podestà and ERS Director of Scientific Relations with the EU, Eva Polverino. 

The discussion will gather cross-party Members of the European Parliament Tomislav Sokol (Croatia, EPP), Radka Maxova (Czechia, S&D), Stelios Kympouropoulos (Greece/EPP) around the lung health policy that helps Europe to #KeepBreathing. They will discuss opportunities and concrete actions for the EU to improve lung health in Europe:

• Prevention & public health measures 
• Respiratory care, research and innovation 
• Steps to prepare for the next respiratory health crisis 

Launch of an EU action on lung health 

In the webinar, EFA together with the ELHG will launch a new publication: “#KeepBreathing: A vision for EU action on lung health 2024-2029”. The document lays out an immediate action plan to improve lung health across three areas – prevention, care and research for a healthier, stronger and more resilient society in Europe.

The ELHG is a partnership of nine European patient associations and healthcare professionals, including the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA). Lung health groups are joining forces to raise awareness about lung health, highlighting the importance of lungs in a #KeepBreathing campaign.

The ELHG advocates across three key policy areas: prevention, care, and research. Addressing them will devise coherent EU policies to ensure Europeans can #KeepBreathing, improving millions of lives, better preparing Europe for future health crises, and lessening the strain on the healthcare system.

We say the time is now for a lung health policy that helps Europe to #KeepBreathing. Join our event on 21 February, 13:00-14:00 CET, and become part of the discussion on how to improve lung health in the EU. Registrations are available here.

The European Lung Health Group (ELHG) thanks EFA’s sustainable funding partners for their unrestricted educational grants which have helped the association in coordinating the work towards BREATHE Vision for 2030 and its activities: Astra Zeneca, Chiesi, and Roche. More information here.

We are deeply saddened to inform that President of RESPIRA Association, Portugal, our dear friend and colleague, Isabel Saraiva has passed away.

We have known Isabel since 2013 when RESPIRA joined EFA. Since then, she has been a cornerstone of our COPD members community. Her positivity, great sense of humor, sharp mind and dedication has played an outstanding role in improving quality of lives of patients with respiratory diseases. Isabel was a super advocate and has made a remarkable contribution to raising the Standards of Care and Prevention for COPD in Europe.

As a former Chair of the European Lung Foundation as well when serving as EFA board member Isabel was inclusive, empathetic and full of solidarity.

We would like to represent our deepest sympathy and sincere condolences to RESPIRA and Isabel's family, friends and colleagues.

Thank you Isabel, you will be missed, our community will not be the same without you.

On behalf of Friends and Colleagues in EFA, 

Marcia Podesta, EFA President 

Susanna Palkonen, EFA Director 

The European Medicines Agency (EMA) is requesting more often and more deeper collaboration with European level patient organisations such as EFA. In the last quarter of 2023, the agency held several meetings that involved EFA representatives to the Patients and Consumers’ Working Party, Isabel Proaño (Director of Policy) and Erna Botjes (President of EFA Dutch Member Stichting Voedselallergie).

EMA early contact with EFA on chronic hand eczema 

In September, EFA conducted a targeted consultation with members active on atopic dermatitis to respond to a request from EMA on patients views on chronic hand eczema. This process, labelled “early contact with patients organisations” by the agency, started a few years ago with the aim to provide members of the EMA Committee on Human Medicinal Products (CHMP) with patient and careers considerations, to assess the benefits and risks of a medicine which has been submitted to market authorisation in the EU.

While EFA’s reply to EMA remains confidential, we value the opportunity to consult our community on key issues related to a disease and living with that disease, that patients expect to be addressed by new technologies entering the market. 

EMA Joint PCPWP-HCPWP in November

In November, EFA actively participated in the two days joint meeting of the EMA working parties with patients and consumers and healthcare professionals. The topics discussed were tightly linked to the current legislative developments around (digital) health data (presentation), as well as on the implementation of the EU Health Technology Assessment Regulation (HTAR) (presentation). 

The meeting also served to know more about agencies work on: 

• the establishment of the Union critical medicines list, which is meant to anticipate/avoid shortages of key medicines and be better prepared to respond to health crisis
• the upcoming EMAs report on the lessons learnt from COVID; 
• social media as a means to counter misinformation and disinformation.

The full meeting agenda and supporting documents are available in the European Medicines Agency website. 

EFA participation in the HMA/EMA Big Data Stakeholder Forum 2023 

In December, EFA participated in the fourth annual HMA/EMA Big Data Stakeholder Forum. Understanding when to have confidence in novel technologies and the evidence generated from Big Data benefits public health by supporting medicines development, improving treatment outcomes, and facilitating earlier patient access to innovative treatments. As such, this year’s edition of the Stakeholder Forum focused on the work of the Big Data Task Force, and topics related to the value of Real-World Evidence (RWE), novel technologies and methods driving changes in evidence generation, with keynote speakers from the EMA, patients and healthcare professionals’ representatives, payers and industry representatives, as well as academia. 

For EFA’s work, the focus on the Patient Experience Data (PED) and its potential in EU medicine regulation was particularly interesting, as the inclusion of PED is detrimental in developing a pharmaceutical framework which is patient centric, and enhancing the impactful use of PED will lead to better patient outcomes.

EMA European Network of Paedriatic Research annual meeting

In October, EFA participated in the European Network of Paedriatic Research (Enpr) meeting which served to take stock of the advancements during the year. The network is composed mostly by clinicians and researchers while there is some patient representation. Their focus is addressing research questions that are specific to child patients, such as involvement of children in trials, retention of young patients in research, and the role of different professionals involved to enable research. 

The full meeting agenda as well as information on the work of the Enpr is available in the European Medicines Agency website. 

The EFA Team has grown – new colleagues joined our mission to support with Projects, Programmes, Community and Communications, bringing new skills to support the effective implementation of the EFA Programmes.

In 2023, we welcomed at EFA new team members to support our annual programme and the development of EFA communities.  

The Communications team has been reinforced with Roberto Blandino (Communications Manager), who joined EFA in February, Polina Peredera (Communications Officer) and Soraia Ribeiro (Digital Developer), both joining in July. They all work under the direction of Isabel Proaño, who leads EFA’s Policy and Communications. 

The Programme team has been reinforced with Agata Papotto (Prevention & Healthcare Manager) who started in February, and with Anton Basenko (Community Engagement Manager), who joined in September. They both work under the coordination of EFA’s Programme Manager, Valeria Ramiconi. 

New bios and new pictures of all the team members as well as of the current EFA Board elected in May are available in the “Organisation” page of EFA’s website. 

At a time of increased integration of digital technology in all aspects of life, food information is just another field expected to go through a substantial transformation. New channels to access food information are gaining in popularity in Europe, alongside traditional package labelling, which is crucial for people with food allergies.

The work of the Codex Alimentarius Commission, and in particular its Codex Committee on Food Labelling (CCFL) around the use of technology for food information is of utmost importance, as it will largely frame the technical aspects of food labelling, but also define the level of accessibility to food information for the public, and especially most vulnerable groups - food allergy patients.

The decision of the CCFL to develop a new guideline for the use of technology in food labelling aimed to streamline an emerging practice that was not sufficiently addressed neither from the General Standard for the Labelling of Prepackaged Food (GSLPF) or the Codex work on e-commerce. The new guidelines would also define the circumstances where the use of technology would be appropriate in food labelling; ensure consistency between on-pack information and that provided through technology; and facilitate legibility, language, presentation of information and accessibility to consumers.

Digital means for health-related information on food products, such as ingredients and allergens, are extremely helpful, but can only be additional and/or complementary to the on-pack information on allergens, and must never fully replace it. In other words, health-related food information must be never provided exclusively via electronic means.This is why EFA is driven by one key principle: physical on-pack labelling is the most basic and important source of information on allergens.  

EFA has developed a set of priorities to ensure that the use of technology for food information comes at the service of consumers living with food allergy:

Same label on-pack and online

Allergen information to consumers provided electronically must be consistent with the information on the label and clearly refer to the specific product (recipe and manufacturer) to ensure clarity and avoid confusion

Selling food means providing information on food allergens  

It is particularly important that third parties who sell food to consumers need to be aware that allergen information must be accessible to consumers before purchasing the product.

Digital as complementary only 

Digital means of food information can be useful tools during emergencies. However, they are not equivalent to conventional labelling on a daily basis and should only complement on-pack labelling. For EFA, the principle must be complementarity, rather than replacement.

Free access to electronic food information

As for the protection of personal data, it must be ensured that any electronic information should be available without the obligation for a consumer to share their personal data to access it to secondary or third parties. Consumers with food allergies need to have immediate access to information relevant to their disease, ithout being dependent on a third party platform or app.

Read full EFA responses to the consultations on the use of technology to provide food information here:    

April 2022: technology consultation

April 2023: consultation (step 3)

October 2023: consultation (step 5)

More information about our work on food labelling is on our website. 

Grocery e-commerce has been selling more and more prepacked food in the past years. In 2023, the Codex Committee on Food Labelling (CCFL) has launched a consultation process to gather input around the e-commerce of food.

Technological advancements, but also the unforeseen circumstances brought by the COVID-19 pandemic, have boosted internet sales and home delivery of food, leading the market to a steep diversification. Regardless of the circumstances or mode of purchase, people with food allergies need accurate and timely information about food composition and allergens present in food.

Food allergen labelling is essential to protect the health of consumers with food allergy. Therefore, foods supplied through internet sales/e-commerce must undertake the same information requirements as foods sold in stores. In actual terms, all ingredient information must be provided both at the point of e-commerce sale and the point of delivery. 

With this aim achieved, EFA actively worked with its community of members to ensure that other key provisions serve food allergy patients. These include:

Takeout foods should also be labelled

EFA stressed that the scope of the guidance must include also food pre-packaged at the point of sale, which applies to many online purchases (e.g. when ordering from a pizza or burgers restaurant).

Small foods also count

Regarding information exemption for small units of food, EFA strongly believes that this should not apply to online commerce. As this is a provision referring to physical products with small packaging that cannot contain all the information, such an exemption should not apply in an e-commerce context, as webpages do not have a space limit. 

Fresh foods, fresh review date 

EFA considers it important that information on e-pages mention the ‘last review date’, where retailers state the last time they reviewed the allergen information.

Let’s say no to labels we don’t understand

As for the presentation of mandatory information, EFA supports the use of language that is easily understood by consumers in the country in which the food is marketed and to which it may be delivered. This is a principle arising directly from the existing EU law (Regulation 1169/2011 on food information for consumers).

Unitended allergens are allergens too

Consumers with food allergies need to be aware of allergens both as ingredients and in case of unintended allergen presence through Precautionary Allergen Labelling (PAL), the label for which is voluntary. As hidden allergens are also allergens, EFA strongly calls for PAL statements to become mandatory, including compulsory education for Food Business Operators (FBOs) and other involved actors.

EFA looks forward to the next steps of this important consultation process and working together with Codex experts towards guidance that fully reflects the needs of food allergy patients to be safe when buying food from e-commerce channels.

You can find the full EFA responses to these consultations here:  

April 2023: eCommerce consultation (step 3) 

October 2023: eCommerce consultation (step 5) 

Find more information about our work on food labelling on our website.