OpenLobby.EU
Explore

European Federation of Allergy and Airways Diseases Patients' Associations

EFA

The European Federation of Allergies and Airways Diseases Patients' Associations (EFA) is the European voice for over 200 million people living with allergies and airway diseases.

Lobbying Activity

Response to Update of format of F-gas labels

4 Jun 2024

The European Federation of Allergy and Airways Diseases Patients Associations (EFA) is the voice of over 200 million people living with allergy, atopic eczema, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. EFA welcomes the opportunity to provide input on the draft Implementing Regulation on the format of labels for certain products and equipment containing F-Gases. This piece of tertiary law, further defines the provisions adopted in the F-gas Regulation (EU) 2024/573 that was adopted on 7 February 2024 and started to apply on 11 March 2024. The regulation covers metered dose inhalers (MDIs) containing F-gas as a propellant, applying climate change mitigation targets to crucial medicines for asthma and COPD patients in the EU, Europe, and beyond. Our EFA response to this consultation aims at informing the European Commission about patients concerns, needs and safety when adopting new labelling of medicinal products. It is imperative that the provisions in this Implementing Regulation to disclose environmental and climate footprint, are informative and do not harm or compromise patients health. Therefore, we present several proposals to balance the climate and transparency targets that we support, with the continued access and unequivocal essential use of life-saving medication like MDIs.
Read full response

Response to Health technology assessment - Joint clinical assessments of medicinal products

2 Apr 2024

The European Federation of Allergy and Airways Diseases Patients Associations (EFA) is the voice of 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 45 national associations from 26 countries and channel their knowledge and demands to the European institutions. We connect European stakeholders to ignite change and bridge the policy gaps on allergy and airways diseases so that patients live uncompromised lives, have the right and access to the best quality care and a safe environment. EFA welcomes the adoption of the Health Technology Assessment Regulation (EU) 2021/2282 (HTAR), which contributes to improving patients access to innovative health technologies in the area of health, such as medicines and certain medical devices. Since 2016, EFA has been deeply involved in the development of the Health Technology Assessment (HTA) legislative framework, bringing the allergy, atopic eczema, asthma and chronic obstructive pulmonary diseases (COPD) patients perspective to inform the setup of HTA cooperation at EU level. We have joined the new HTA Stakeholder Network, launched as part of the implementation plans of the HTA Regulation, as well as the different stakeholder workshops organised by DG SANTE and leading to this draft Implementing Regulation on Joint Clinical Assessment (JCA) for Medicinal Products. We highly welcome the opportunity to provide written feedback on behalf of allergy, atopic eczema, asthma and COPD patients associations across Europe. Please find attached EFA's complete statement in response to this consultation, which includes points regarding the selection and involvement of patients, patient organisations, carers and young patients in the joint clinical assessment process, and the publication of joint clinical assessment and summary reports. EFA remains committed to contributing to the implementation of the Health Technology Assessment legislative framework in a patient-centred manner that serves the respiratory patients community, as part of the HTA Stakeholder Network and further work in the implementation plan of the HTA Regulation.
Read full response

Response to Evaluation and revision of the general pharmaceutical legislation

8 Nov 2023

The European Federation of Allergy and Airways Diseases Patients Associations (EFA) is the voice of 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 45 national associations from 26 countries. EFA is a full member of the European Patients Forum (EPF) and has contributed to the EPFs position papers on the topic, and specifically on issues related to addressing shortages and threats to health like antimicrobial resistance (AMR), which are very important for our community and which we fully support. EFA welcomes the proposed revision of the EU pharmaceutical framework, one of the most impactful EU files in the area of health, and in particular the proposal for a Regulation on the Union procedures for the authorisation and supervision of medicinal products for human use and establishing rules governing the European Medicines Agency (EMA). EFA has highly appreciated taking part in all phases of the consultative process launched by DG SANTE to inform this revision, started in 2020, and welcomes the opportunity of this last public consultation to bring the perspective of allergy and airways diseases patients to the proposed Regulation. In this context, EFA would like to highlight the following points in light of the proposed Regulation: 1) Welcomed increased patients involvement in the overall regulatory process, with representations of patients in the CHMP and PRAC at the EMA; 2) Retain the expertise of the paediatric and orphan committees at the EMA, by maintaining the PDCO and COMP, or similar permanent structures; 3) Reinforce the patients voice through financially compensated patients representatives for their contribution in the EMA Committees. Please refer to the attachment for detailed feedback to each of the points listed above.
Read full response

Response to Evaluation and revision of the general pharmaceutical legislation

8 Nov 2023

The European Federation of Allergy and Airways Diseases Patients Associations (EFA) is the voice of 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 45 national associations from 26 countries. EFA is a full member of the European Patients Forum (EPF) and has contributed to the EPFs position papers on this proposal, specifically on issues related to the incentives driving medical innovation to the patients most in need and the reduction of inequalities in the actual access to medicinal products in the EU, which are very important for our community and which we fully support. EFA welcomes the proposed revision of the EU pharmaceutical framework, one of the most impactful EU files in the area of health, and in particular the proposal for a Directive on the Union code relating to medicinal products for human use, and repealing Directive 2001/83/EC and Directive 2009/35/EC. EFA has highly appreciated taking part in all phases of the consultative process launched by DG SANTE to inform this revision, started in 2020, and welcomes the opportunity of this last public consultation to bring the perspective of allergy and airways diseases patients to the proposed Directive: Have a patient-centred definition to address unmet medical needs, that takes into account the patients experience and the burden associated with disease; Retain a mandatory paper package leaflet, which is to be complemented by an electronic version leaflet; Introduce information about the environmental impact of the medicinal product, including the environmental footprint and guidance for product use and disposal on the package and/or leaflet; Improve the regulatory process of combination products, that is currently highly fragmented across legislations. Please refer to the attachment for detailed feedback to each of the points listed above.
Read full response

Meeting with Vera Tax (Member of the European Parliament, Rapporteur for opinion)

7 Feb 2023 · Air Quality (Assistant participated)

Meeting with Petros Kokkalis (Member of the European Parliament, Shadow rapporteur)

26 Jan 2023 · Ambient Air Quality directices recast

Meeting with Javi López (Member of the European Parliament, Rapporteur) and European Environmental Bureau and

23 Jan 2023 · Revision of the Ambient Air Quality Directives

Response to A European Health Data Space

28 Jul 2022

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) welcomes the Commission initiative for a European Health Data Space, and especially its provisions related to the primary use of data. Regarding particular aspects of the proposed regulation, EFA fully agrees with the contribution of the European Patient Forum (EPF) on the need to put in place a policy framework that ensures: 1. patient control of their electronic data 2. the involvement of patient organisations in the governance of the EHDS 3. the coordination with already existing data protection authorities at both EU and national level Importantly, the new framework must ensure access to justice as a fundamental right for all, among which vulnerable groups such as patients. We attach herewith EFA's positions in further detail.
Read full response

Response to Revised recommendation on smoke-free environments

20 Jul 2022

Representing patients living with chronic respiratory diseases such as allergy, asthma and chronic obstructive pulmonary disease (COPD), EFA calls for an ambitious update of the Council recommendation on Smoke-Free Environments, one that protects human health from harmful exposure to second-hand smoke, promotes smoke-free environments, and supports the development of and access to smoking cessation programmes at the national level. Our recommendations revolve around the following key policy asks:  Reinforce the adoption of the FCTC provisions on smoke-free environments at the national level, while supporting their implementation on the ground  Prohibit the use of tobacco and related products in areas currently not covered by the Council recommendation, including schools, terraces, beaches, playgrounds, and sports facilities  Ban the use of e-cigarettes and novel tobacco products, including heated tobacco products, in all public places where traditional smoking is not allowed  Encourage the adoption of smoking cessation programmes, promote the exchange of best practices among Member-States and facilitate access to quitting treatments and techniques  Map and assess existing smoking cessation programmes in each Member State
Read full response

Response to Review of EU rules on fluorinated greenhouse gases

29 Jun 2022

EFA welcomes the determination of the European Commission to reduce greenhouse emissions generated in the European Union. Climate change negatively affects human health, and more especially the health of vulnerable people such as allergy, asthma and COPD patients. Asthma affects 30 million children and adults under 45 years of age in Europe and it is estimated that COPD affects 10% of the European population. The proposal plans to eliminate the F-Gases exemption for medical use (in asthma and COPD medication) to fully align the EU to international climate law. By eliminating the exemption inhalers will enter the EU F-Gases quota system (art 16.2) with a set volume of gas available, driving a progressive reduction of F-Gases in medicine, and therefore less greenhouse gases from asthma and COPD medication. The caveat to this plan is that the operational side of EU adaptation to climate change is overlooked. It raises implementation uncertainties on access to care within our European asthma and COPD patient community around the following challenges: - Medicines’ transition, readiness and preparedness: development timelines, monitoring progress and exemptions - Health and social impacts of the proposed legislation: direct and indirect costs, and impact on third countries - Patients’ right to know about their medication: labelling, transparency and consultative forum - Opportunity for better lung health: self-management, patient education and health literacy Please refer to our complete response attached for more information. In general, we request transparency and information on scenarios for patients who use these medicines presently, offer our network of patient advocates to inform patients, and wholeheartedly support healthy climate targets for lung health.
Read full response

Response to Revision of the Energy Performance of Buildings Directive 2010/31/EU

31 Mar 2022

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) represents the voice of patients living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. On the occasion of the revision of the Energy Performance of Buildings Directive (EPBD), EFA highlights the importance of addressing Indoor Air Quality, a key environmental determinant of health accounting for 10% of non-communicable diseases mortality globally. Rarely visible, indoor air contains pollutants such as mould, dampness, volatile harmful chemicals and tobacco smoke, as well as ambient emissions from solid fuels and non-exhaust pollution. Long-term exposure to these pollutants can result in the development of respiratory diseases, aggravate allergy and chronic respiratory diseases such as asthma and chronic obstructive pulmonary disease (COPD). We therefore strongly encourage the Commission to apply a health-first approach and complement the targets on the energy efficiency of buildings with measures that address Indoor Air Quality. In the attached response, we elaborate on the following key asks: 1. Strengthen the performance of buildings contribution to health and wellbeing by explicitly addressing indoor air quality for new and existing buildings 2. Define health quality standards for buildings, such as healthiness of built environments and indoor air quality, including the revision of the minimum energy performance standards (MEPs) to establish a harmonised indoor air quality monitoring and certification through the adoption of a mandatory indoor air quality certificate for all new and renovated buildings 3. Ensure proper assessment of the ventilation and air conditioning systems of the building, based on harmonised testing standards 4. Match energy criteria with built-in ventilation solutions. In light of we stress the need for healthy indoor air that aims at EU legislative premises that link ventilation, health and energy performance of new and renovated buildings 5. Include funding tools and mechanisms for building renovations that seek health outcomes. EFA is ready to engage closely with the European Parliament and the Council to ensure that these considerations are reflected in the final legislative text of the revised EPBD.
Read full response

Response to Revision of the Energy Performance of Buildings Directive 2010/31/EU

22 Mar 2021

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) represents the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We fully acknowledge that renovations can drive the transition towards green buildings but also healthy living environments, reducing disease risk factors and allowing vulnerable groups of the population. For example indoor air pollution is a key environmental risk factor, particularly harmful to the human respiratory health. Long-term exposure to polluted air indoors can result in the development of respiratory diseases, aggravate allergy and chronic respiratory diseases such as asthma and chronic obstructive pulmonary disease. To this end, EFA calls the Commission to: - Ensure healthy indoor environments through a mandatory Indoor Air Quality certificate to act as a reliable source of information for residents and workers. Such as certificate could be established following the health-based ventilation guidelines, and contain a proper assessment of the ventilation and air conditioning systems of the building, based on harmonised testing standards. - Provide certainty on the healthiness inside buildings. This could be possible through a post-COVID Eurobarometer on the perception of Europeans on closed spaces which would be key to understand the awareness and importance that Europeans grant not only to indoor air quality as an item, but also the whole technology around it, ventilation, heating and cooling in closed, but shared, spaces - Establish financial instruments to encourage healthy building renovation, by encouraging and funding national financial schemes tailored to health needs Therefore, EFA strongly favours Option 3 that provides for the amendment of EPBD. In particular, we strongly encourage the European Commission to apply the principles of policy coherence, health-in-all-policies and One Health, and to widen the scope of the EPBD to benefit citizens health beyond the necessary actions for the economy and the environment.
Read full response

Response to A European Health Data Space

3 Feb 2021

We welcome the initiative of the European Commission to setup a European Health Data Space (EHDS). As the voice of 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) fully acknowledges the immense benefits that data sharing applied to health can bring to people’s diagnosis, prevention, disease management, and quality of life. Here below is a list with EFA’s main considerations, supported by the European Academy of Allergy and Clinical Immunology (EAACI): 1) Access to data, data sharing and re-use: we welcome objective 1.a to setup a legal and governance framework, as the necessary step to build trust for health data sharing. Health data are the most sensitive facts of an individual and require extreme caution in their handling. EFA advocates for an EU framework of trust and ethical standards around how data are being collected, shared, used and processed, with patients as central actors. Ownership and consent, means of data collection, access, portability/interoperability, use/re-use, and issues of data protection and privacy: these are only some aspects that need to be addressed to ensure transparency, privacy, security, and trustworthy use of data. Moreover, proposed notions such as ‘data altruism’ should be carefully looked at to ensure they respond to patient rights, control and access. 2) Lowering technical barriers to data: objective 1.b is crucial to develop a data space that ultimately improves healthcare services. The proposal could fill persisting gaps in the individual exercise of health data rights, largely due to a fragmented policy landscape across the EU. For example, considering the chronic nature of allergy, asthma and COPD, it is important to standardise the exchange of patients’ data through Electronic Health Records and ePrescriptions. The lack thereof poses barriers to EU cross-border healthcare rights, and even intra-country mobility. 3) Patients and citizens access to data: we applaud objective 1.c as the one that addresses ownership, access and citizens’ use over their own health data. Policy options for lay data access and easy portability shall be explored, while enabling citizen science: the development and integration of patient-driven, Real-World Evidence (RWE) data to improve self-management and meaningful patient-reported outcomes, provided they are handled within a framework of trust and ethical standards ensuring privacy and security. 4) Boosting digital health in Europe: we welcome objective 2, which aims to promote digital health services and products. These services can help reduce for example misdiagnosis: according to an EFA survey, 16% of asthma and COPD patients across Europe get a wrong first diagnosis, despite being major chronic and common diseases. Digital health can truly benefit patient-centricity and diagnosis, but also help enabling optimal care decisions, and improving treatment adherence. However, digital health cannot replace the face-to-face encounter with your healthcare provider. It should be conceived as a part of the healthcare system and help address persisting issues such as follow up, adherence, isolation and lack of self-management plans. Priority should be given to digital health equity, removing barriers to access digital services. 5) Ensuring informed, involved and empowered patients: the Commission should promote digital literacy for all, based on the principle of inclusiveness, and design and implement the space fully taking patients’ considerations into account, involving us at all stages through an appropriate framework that enables a continuous feedback. EFA and its patient community is ready to engage with the European Commission on the next steps of the European Health Data Space. As members of the European Patients’ Forum, EFA fully shares and supports EPF’s contribution to this public consultation.
Read full response

Response to Proposal for a Regulation on a Union framework addressing public health emergencies (EMA)

2 Feb 2021

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is the voice of 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. EFA is member at the EMA Patients’ and Consumers’ Working Party (PCWP), therefore having first-hand experience of the agency’s strong engagement with stakeholders. Over the last 2 years, we have participated in over 20 EMA events and procedures, including joint meetings, webinars, public consultations, medicine overviews and scientific processes. Therefore, we strongly welcome the proposal for the reinforcement of the European Medicines Agency mandate and resources. Today more than ever, EMA’s role is vital in facilitating effective development of medical products and devices for the protection of public health in the EU. In the document attached to our response, we provide with our patient perspective on the proposed regulation, and suggest some ideas in the following areas: 1. A strengthened mandate for EMA to curb shortages 2. Increasing EMA’s capacity to address critical medical devices 3. Upgrading EMA’s role in promoting effective research 4. Maximising vaccine effectiveness 5. Improving the communication of EMA’s work 6. Access to medicines In addition, EFA is a full member of the European Patients’ Forum (EPF) and fully supports its contribution to this public consultation.
Read full response

Response to Revision of EU Ambient Air Quality legislation

14 Jan 2021

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) welcomes the initiative of the Commission to revise the Ambient Air Quality Directives. Air pollution remains the single largest environmental health risk in Europe, and a major cause of mortality responsible for around 400.000 premature deaths per year. The millions of patients living with allergy, asthma and COPD in Europe are among the most affected by air pollution in the short and long-term, bearing a disproportionate burden because of their disease. Apart from the enormous health burden due to air pollution, there is a considerable socio-economic cost linked. In the attached response, we outline the views of our patient community on why, despite recent improvements, there is still a long way to go to ensure the healthy, safe and breathable air that every person living in Europe deserves. Considering the 3 Policy Areas laid out in the Inception Impact Assessment: - We call for the full alignment of the EU air quality standards with the latest WHO Air Quality Guidelines, when they are published in 2021. Urgent prioritisation should be given to the pollutants scientifically proven to be more dangerous for human health, such as PM2,5. - We support improvements in the air quality framework to address existing gaps in access to publicly available, real-time information. Such a framework should take into account Indoor Air Quality to achieve a truly holistic Air Quality Framework Strategy. Moreover, information should be improved on pollen, including via the expansion of its monitoring. - We call for stronger implementation, including through rules to streamline monitoring and corrective actions, with specific reference to the network of air quality monitoring stations. EFA remains at the disposal of the European Commission for the upcoming activities and deliberations on the crucial issue of air quality.
Read full response

Response to Final evaluation of the 3rd Health Programme 2014-2020

17 Nov 2020

As representatives of patients with allergy, asthma and COPD, EFA considers EU action on health of utmost importance to fulfil EU’s responsibility to ensure a high level of human health protection in its policies and activities (Art 168, TFEU). In general the programme and annual work programmes have helped to improve health in the European Union. We acknowledge its contribution in trends that define certain health policy areas today, including the push towards digital health; increased exchange between health-related civil society organizations; improved access to better and safer healthcare through schemes such as the European Reference Networks, as well as rules that enable cross-border cooperation among Member States. However, we regret that the 3rd Health Programme has executed a rather narrow interpretation of the EU’s mandate on health, ultimately impacting the EU’s efficiency to protect people from chronic disease challenges and cross-border health threats. The COVID-19 pandemic and crisis has shown today how important and life-saving EU action on health is, and how health should be a priority policy for a safe and healthy Union. • The preamble of regulation 282/2014 on the establishment of a third Programme for the Union's action in the field of health (2014-2020), recital 15 explicitly mentions the Programme “should contribute to the creation and maintenance of robust mechanisms to detect, assess and manage major cross-border health threats” from severe acute respiratory infection (SARS), among others. Unfortunately, the activities developed have proved insufficient to protect our health. • The scope of the programme implementation has not been properly resourced and tooled to address chronic disease (priority one), despite it accounts for 80% of premature deaths in the EU. We consider that action on chronic diseases could have been core part of the Health Programme instead of activities ran in separate entities like CHRODIS+. To increase coordination and move towards the same goals, we continue calling on the EU to adopt a comprehensive EU strategy to tackle chronic diseases. • Whether it is tobacco control, air pollution or mental health, patients believe public authorities are not doing enough to protect them of those risks. From our perspective, the 3rd Health Programme attention to these issues key for patients and carers has been marginal and not resulting in a health in all policies approach as we expected it to be at EU level (priority one). • The objective of working towards more patient empowerment and involvement (article 8 and priority four) has been hampered by financial rules limiting the access of patient groups and other civil society organisations to public EU funding. Many patient groups, who are firm stakeholders in the EU policy process, have become ineligible for EU public funding, jeopardizing patients’ representation in EU decision-making processes. In addition, there has been practically no funding in the health programme available for European level civil society, including patient groups for project grants. • As patient representatives, we have suffered from the reduced opportunities to contribute to the Health Programme, a gap that has resulted in less communication between EU officials and representatives, and patient groups. The creation of the EU Health Policy Platform started as a great tool to address issues that were not included in the 3rd Health Programme, but it is only now, at the end of the Health Programme 2014-2020, that the platform is being used for sharing and networking. The COVID‐19 crisis has highlighted, once again, that patients should be involved in shaping health policy at national and European levels, and why their unique knowledge and expertise, collectively and individually, are vital. The next health programme represents a unique opportunity to act on this, whilst enhancing European coordination to protect our health.
Read full response

Response to EU Action Plan Towards a Zero Pollution Ambition for air, water and soil

29 Oct 2020

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) is glad to contribute to this key Commission initiative, which is set to be a defining factor of the future environmental policy of the Union. Representing patients with allergy, asthma and COPD, air pollution is a key environmental risk factor that affects the health and Quality of Life, while having far-reaching consequences in social and financial terms. Our patient community asks to think quality, and not pollution, when regulating about air: We actively seek environments with good air quality, a result-oriented concept that is not yet fully integrated into EU action, which is rather pollution/pollutants oriented. Our overall call is for an EU air quality framework strategy to ensure consistency and synergies across policies and sectors contributing to air pollution, which: - Aligns with the latest scientific advice on air quality to preserve good health (the current and future WHO air quality guidelines) - Contributes to the achievement of climate goals the EU has committed to at the international level, especially the Paris Agreement - Sets stricter emission levels for the energy, industry, transport, agriculture, farming, waste management and buildings sector - Addresses climate change considerations affecting air quality i.e. temperature, humidity, pollen Moreover, an effective air quality framework strategy should address indoor air quality (IAQ), integrating it into the broader air quality discussion. This requires action on healthiness of buildings i.e. mandatory IAQ certificates, standards on air conditioning and ventilation, and the emissions from construction materials; effective policies on tobacco, ensuring 100% smoke free environments; and safe, chemical-free indoor workplaces. With this in mind, we look forward to contributing our perspective in the upcoming public consultation, as well as engaging with the Commission and other stakeholders in future discussions on air quality in the EU.
Read full response

Response to Review of EU rules on fluorinated greenhouse gases

7 Sept 2020

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is the voice of over 200 million people living with allergy, asthma, and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 39 national associations from 24 countries and channel their knowledge and patients’ needs to the European institutions, so that patients live uncompromised lives, have the right and access to the best quality care, and a safe environment. EFA welcomes the European Commission’s Green Deal and all sectoral legislative revisions that it entails, including those targeting climate change and air quality both indoors and outdoors. Allergy, asthma and COPD patients are directly impacted by climate change and air quality. We welcome the review of the F-Gases regulation as an opportunity to demonstrate to patients and the world, that despite asthma and COPD patients being victims of climate change, they are also key actors to reduce greenhouse gases (GHG). However, the access to the care they need cannot be compromised, as that would be against their health, and impact their social and fundamental rights. Some F-gases are used in the pharmaceutical sector for human use. Pressurised metered dose inhalers (pMDI) contain a hydrofluoroalkane (HFA) molecule that acts as a propellant to quickly release the liquid medication into the lungs effortlessly. pMDI are mainly used in asthma and COPD relievers as a life-saving medication to avoid or stop asthma attacks and COPD exacerbations, or as an additional rescue medication in case of an attack for any stage of asthma. As patients representatives, EFA fears that phasing down pMDI could negatively impact the health and wellbeing of asthma and COPD patients. We therefore encourage the European Commission to: - Fully integrate the human and patient health aspects in all the EU and national strategies, including impact and policy scenario assessments, and policies and actions to phase down F-Gases, especially those used as propellants in asthma and COPD treatments, so that there are no unintended negative impacts on health; - Work with patient organisations representing the people affected, and with primary and secondary healthcare professionals and producers to understand the health needs of patients with asthma and COPD. To ensure this while considering a realistic time-frame to implement technological change. This way all facts can be known in order to take any decision regarding medical exemption during this change; - Conduct quantitative and qualitative research on the impact on patients when changing treatment, including economic aspects such as accessibility. To also consider adherence to treatment and the psychological aspects, including fear due to change; and the treatment changes during the pandemic; - Promote and stimulate the development of green smart inhalers that are recyclable; - Inform citizens and patients how they can contribute to a healthy environment without compromising on their care and treatment; Patient and healthcare professional organisations are partners to reduce the environmental impact of our medications through health literacy, inhaler techniques and simple information; - Encourage health authorities and healthcare professionals to invest in the implementation of asthma and COPD disease management guidelines, such as GINA and ERS-ATS to ensure that every patient has a self-management plan, to support them in becoming in control of their symptoms and therefore reduce their need for relief medication; - Connect with the World Health Organisation to estimate how potential changes in the EU F-Gases Regulation might impact health care and treatments in third countries, especially the poorest populations in terms of access to basic medication for asthma and COPD. We remain at the disposal of the European Commission to further provide our perspective on the review of this legislation.
Read full response

Response to Hygiene rules on allergens, food redistribution and food safety culture

6 Aug 2020

I hereby convey the position of the European Federation of Allergy and Airways Diseases Patients' Associations - EFA. Representing the 17 million Europeans living with food allergies, EFA supports the revision of Regulation (EC) No 852/2004 on food hygiene, and its goal to reinforce the hygiene rules applicable to foodstuffs in the supply chain and production process. Given the increasing prevalence of food allergy in Europe and globally, especially among children, patients and consumers with food allergies request more and more access to clear, accurate and timely food information. To this end, we strongly call the Commission to amend the Regulation on the basis, among others, of the following considerations: - explicitly acknowledge the interlinks between food hygiene and allergen information (Reg. 1169/2011); - put in place mandatory procedures for cleaning, if allergenic food has been transported through means used for non-allergenic food; - embed allergen management as a key element of food hygiene systems, applicable to all people involved in food management, and on the basis of mandatory allergen management training; - upgrade requirements on good hygiene practices in line with the upcoming Codex Code of Practice on Food Allergen Management for FBOs, via quantitative risk assessment on the basis of reference doses for food allergens; - encourage the evaluation of the risk posed by Plant Protection Products such as pesticides and fertilisers, which might be consumed while still containing residues of the 14 recognised allergens - and proceed to regulatory measures on appropriate labelling, where necessary. Please find more information on our positions and reasoning with regards to this process in the attached document.
Read full response

Response to Commission Communication – "Renovation wave" initiative for the building sector

8 Jun 2020

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) represents the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. In our response to the EU Renovation Wave initiative, we highlight the harmful effects of indoor air pollution on human health, and call the Commission to act decisively ensuring healthy indoor environments. EFA's policy recommendations, which reflect the long-standing concerns of patient living with respiratory diseases, will become even more urgent in a post-Covid context. For example, we call the Commission to reinforce certainty around the healthiness of buildings by investigating the perceptions of Europeans on closed spaces in light of the Covid-19 crisis; regulate on a mandatory indoor air quality performance certificate for all new and renovated buildings; adopt a holistic strategy on air quality, tackling both ambient and indoor air; and develop strong synergies among relevant policies, including on workplace health safety, tobacco products and construction materials. Finally, to encourage the expansion of healthy building renovations at the national level, the Commission should provide the adequate financial instruments and incentives, taking vulnerable populations into consideration.
Read full response

Response to Farm to Fork Strategy

16 Mar 2020

EFA welcomes the Farm to Fork Strategy presented by the European Commission, and the opportunity to provide comments on a key initiative of the European Green Deal. We consider this strategy has the potential to inspire encompassing actions towards a sustainable, environment- and climate-friendly food system. We find highly encouraging for people living with allergies the food path approach the strategy proposes: from primary production and processing to healthy consumption and sustainable food waste. At EFA we think the Farm to Fork Strategy should cover two health-oriented dimensions of food: On the one hand, accurate information on food as a fundamental right of consumers with allergies and intolerances; on the other hand, the composition and the quality of the food we eat underpins the onset of non-communicable chronic diseases. Today, 150 million Europeans live with chronic allergic disease, and it is predicted that by 2025 more than 50% of all Europeans will suffer from at least one type of allergy. Meanwhile, about 30 million of children and adults under 45 years old have asthma in Europe , and 5–10% of adults aged over 40 years have COPD . We hereby provide input on what EFA sees are key needs and actions that the European Commission should include in the Farm to Fork Strategy, in order not to leave these people behind.
Read full response

Response to Europe’s Beating Cancer Plan

3 Mar 2020

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is the voice of the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 43 national associations from 25 countries and channel their knowledge and demands to the European institutions. EFA welcomes the European Commission Communication on Europe’s Beating Cancer Plan to address the health challenges posed by cancer. We integrate this EU landmark effort to beat cancer as a pilot model for joint and collective action to improve health, a model that could serve other life-threatening, costly, diseases such as allergy and airways diseases. EFA gladly notes the patient-centered, participatory and research-oriented focus of this initiative. Most importantly, we applaud the emphasis put on disease prevention and the willingness to address the environmental, economic, and social determinants of cancer. At EFA we have since long been advocating for a truly holistic approach in EU policies affecting human health: one that fosters Health In All Policies, integrating health considerations across policy areas beyond health dossiers. Allergy, asthma and COPD patients are affected by many of the issues that need to be tackled to beat cancer and that will be prioritised in the Plan. EFA therefore participates in this consultation to eagerly recommend the following actions in specific common policy areas where not only cancer but also the respiratory diseases patients’ communities and the population at large, can benefit.
Read full response

Meeting with Vytenis Andriukaitis (Commissioner) and

15 May 2018 · HTA

Response to Fitness check of the EU Ambient Air Quality Directives

23 Aug 2017

The EU added value of the directives is clear: air pollution knows no border and EU actions are required. Citizens want to see more actions on environment, as demonstrated by a recent Eurobarometer study. This is even more evident when these actions have the clear potential to improve their health. When checking the directives, the costs related to health effects of air pollution should also be taken into consideration and not only those related to the actions to implement the measures. It is important to continue underlining the special needs of the most vulnerable groups, such as pregnant women, children, the elderly and patients. These are the ones more affected by air pollution and special arrangements need to be put in place. It should be considered that WHO is reviewing their guidelines and that they might become even more stricter. Therefore, this outcome should be reflected in the new proposals. Importance should be given also to measures that facilitate the implementation of the legislation at the national level and a stricter control mechanisms should be put in place.
Read full response