EFA

Representing European atopic eczema patients, EFA took part in the annual  Congress of the European Academy of Dermatology and Venerology (EADV) that was ran virtually from 29-31 October. The Congress gathered patient organisations, medical professionals and more to share the latest advancements in skin care, including inflammatory skin diseases, such as atopic dermatitis, and paediatric dermatology among other topics.

Living with eczema 24/7

EFA held a session that was broadcasted live on the 29^th October and available on our YouTube channel. The session discussed caring for atopic eczema, by exploring the realities and the socio-economic burden of living with the condition, or caring for someone with atopic eczema.

Asking “How do YOU care for atopic eczema?”, the theme of World Atopic Eczema Day 2020, the session centred around the experience of living with atopic eczema for children with the disease and their families.

After an introduction by EFA board member Carla Jones and incoming president of EADV Professor Alexander Stratigos, we heard from Magali Redding, a carer for her child with atopic eczema and CEO of Eczema Outreach Support, on the challenges of caring for children with atopic eczema.  Then, Professor Carsten Flohr presented best practices in caring for atopic eczema, including the importance of a good relationship between the patient and doctor.

Atopic eczema complicates childhood and adolescence

During the session, different challenges faced by children with atopic eczema were discussed. It was highlighted that children with atopic eczema face two “danger transitional zones”: school and adolescence, as these periods in life can be a struggle when also managing atopic eczema. It was reported that on average 1 out of 5 children with atopic eczema are bullied in school, and up to 90% experience trouble sleeping.

Finally, a roundtable discussion went into detail about the challenges and opportunities in creating patient-centred care for atopic eczema to improve quality of life for patients and caregivers.

An impressive 395 participants attended our session and asked a broad range of questions from the use of topical steroids or TCA, the benefits of vitamin D, and the careful monitoring of treatments. There was a clear interest in how a holistic approach to treatment to support young patients is essential.

EADV hosted many more sessions on atopic dermatitis. One session covered “Women Leaders in Dermatology: Exploring Leadership Paths”. It brought together an expert panel to share insight on topics to support women dermatologists such as mentorship and leadership roles.

Other sessions explored treatments for atopic eczema, including steroid-free topical treatments as a tailored approach for milder cases of atopic eczema. Another session looked at the pathophysiology of inflammation, pruritus and skin barrier defects in atopic eczema, and its implications for future treatment.

Despite the online format of the congress, there was still a virtual patient exhibition where EFA hosted a booth with more information on World Atopic Eczema Day. Visitors could learn about EFA’s advocacy work for people with atopic eczema, and all people living with allergy and airways diseases. At the virtual booth EFA exhibited our podcast series from World Atopic Eczema Day 2020, and our #AtopicalLives video.

You can watch the recording of EFA’s live session here and consult the programme here.

Clean air is central to human health and essential to the wellbeing and quality of life for people with allergies and airways diseases.

In 2021, the European Commission will adopt the action plan “Towards a Zero Pollution Ambition for air, water and soil – building a Healthier Planet for Healthier People”. To prepare this important file, the Commission published in October a roadmap for the action plan, seeking public feedback from stakeholders such as EFA.

In our feedback to the Commission, EFA welcomes the roadmap as an all-encompassing initiative that goes beyond solely the environment, and addresses the social, economic, and health aspects. We believe that the Zero Air Pollution Action Plan can become the much needed framework to ensure consistency across all EU policies which tackle air pollution. It will help address the links between the environment and climate change, with health, and plan actions to improve air quality everywhere.

In the views of EFA, the framework should:

• Align with up-to-date scientific advice on air quality to preserve good health;
• Meet international agreements the EU has committed to, especially the Paris Agreement;
• Set stricter emission limits for the energy, industry, transport, agriculture and farming, waste and buildings sector;
• Include climate change consequences which affect air quality i.e. temperature, humidity and pollen;
• Commit to tackle air pollution both indoors and outdoors.

Reducing air pollution is not only essential to act on climate change, but to also improve overall health and well-being. Air pollution is responsible for 400,000 premature deaths each year in the EU. It has also been recorded as increasing risk of developing childhood asthma, and can lead to the development and worsening of allergy, asthma and chronic obstructive pulmonary disease (COPD). During the COVID-19 pandemic, air pollution in urban spaces has also been linked to increased mortality rates from the virus.

According to a 2019 European survey, more than 50% of asthma and COPD patients feel that policy-makers are not doing enough to promote air quality information. EFA views the current legislative framework on air pollution as a patchwork of emission levels by sector. The Zero Air Pollution Activity Plan has the potential to implement a holistic approach to ensure air quality and reduce emissions for the health of people and the planet.

The current aim of the Zero Pollution Action Plan is to secure a healthy living environment for all, as well as healthy ecosystems in Europe. Its goals are:

• To prevent and tackle air, water, soil and consumer products pollution;
• Integrate zero air pollution initiatives into all EU policy developments;
• Decouple economic growth from pollution increase – this means that economic growth will not be connected to initiatives and innovation that cause air pollution;
• Strengthen wellbeing and livelihoods with environmental protection and sustainable development.

You can read EFA’s full response to the roadmap here.

This month the European Commission published its Renovation Wave Strategy. This strategy outlines detailed plans to increase the energy efficiency of building across the EU. When implemented, it promises to create greener homes that emit less greenhouse gas (GHG) emissions, as well as to tackle energy poverty and create green jobs.

According to the EU, over 85% of buildings in Europe were built over 20 years ago, and the majority are expected to last until 2050. Green renovations of old buildings are needed to make sure we live in decent environments for people and the planet, as well as to create a more sustainable Europe.

EFA applauds the EU initiative of a Renovation Wave Strategy to make European buildings more sustainable, but we regret that it misses the opportunity to address how buildings impact our health. EFA highlighted the importance of including health concerns in the EC consultation on the renovation wave.

Why health must be priorititised in making buildings sustainable

Poor air quality in Europe has been considered responsible for 2 million healthy lives lost every year. The situation is particularly problematic for people with allergy, asthma and COPD, who are the first to be impacted by bad indoor air quality.

The renovation of buildings in Europe must also be done to respond to health concerns. In the times of a respiratory infection pandemic, buildings and indoor spaces should be renovated taking into account issues such as indoor air pollution and ventilation. Tackling indoor air pollution is essential for not only for patients with respiratory diseases or allergies, but for the entire population.

This is why EFA calls on the EU not only to detail actions to improve indoor air quality through building renovation, but to also inform about it through an Indoor Air Quality Performance certifi­cate. From our perspective the EU should adopt harmonised measurement and compulsory certification of indoor air quality performance for all new and renovated buildings to assess the quality of the air indoors based on the structure of the building, the ventilation, the average presence of pollutants and the environmental conditions affecting them.

Such a certificate could help set and monitor safe levels for volatile compounds indoors and air properties like temperature, dryness, humidity. This could be a win-win for public health and performance of buildings, towards a new healthy economy.

What the EU is currently working on

The European Parliament adopted in September an own-initiative report on ‘Maximising the energy efficiency potential of the EU building stock’. The EP Industry, Research and Energy committee (ITRE) will be responsible for handling the dossier. In the meantime, the Commission has a number of next steps already in the pipeline: a guidance on the ‘Energy Efficiency First’ principle in early 2021; the revision of the Energy Efficiency and the Renewable Energy Directives; and, importantly, the revision of the Energy Performance of Buildings Directive by the end of 2021.

You can read the full Renovation Wave Strategy from the European Commission here.

EFA participated and gave a short presentation to the Annual Stakeholder Forum of the EU Human Biomonitoring project on 30 September. The project, called HBM4EU for short, explores human exposure to harmful chemical substances, with the aim to generate scientific evidence for health policy.

The HBM4EU project brings together 30 countries, the European Commission, the European Environment Agency as well as stakeholders from civil society. It is co-funded by the EU Horizon 2020 programme.

Adding the patients’ voice to environmental policymaking

Every day, each of us are exposed to chemical agents which can have an adverse impact on our health. They are in the clothes we wear, the products we use, the air we breathe when at home, outdoors, or in the workplace. Vulnerable social groups, such as allergy and chronic respiratory patients and children, bear a disproportionate amount of this burden.

As the only patient organisation stakeholder of the project, EFA Policy Advisor Panagiotis Chaslaridis provided an outline of EFA’s activities across a broad range of issues surrounding the human exposure to dangerous chemicals.

Highlights from the HBM4EU Project

The event was opened with Tony Musu, from the European Trade Union Institute. He spoke about one of the key expectations from the project: to ensure stakeholder input in generating knowledge, to serve  better implementation of the EU legislation. He voiced his concerns over the limited influence that stakeholders can have under the current arrangements that foresees only one meeting per year.

The European Environment Agency (EEA) presented the HBM4EU Prioritisation Strategy. This consists of several work streams to identify priorities for new knowledge, tools and methods on chemical risk assessment. These include the European Partnership for Innovative Health, a draft proposal for the next Innovative Medicines Initiative, currently under discussion; as well as the Partnership for the Assessment of the Risks of Chemicals (PARC). In addition, the project has launched a consultation on citizen factsheets to collect input on nine chemical substances.

PARC was one of the key topic discussed by Adrienne Pittman from the French Agency for Food, Environmental and Occupational Health & Safety (ANSES). PARC aims to strengthen the EU's research and innovation capacity to protect human health and the environment.

Sofie Norager from the Directorate-General Research and Innovation emphasised the expectations of the European Commission for the project, which will run until the end of 2021. Policymaking can greatly benefit from solid scientific evidence on our exposure to chemical substances.

EFA was among the stakeholders to present their current activities on issues related to chemical exposure. Other presenters included PlasticsEurope and the European Center for Environmental Medicine.

Where air pollution impacts policy

Air pollution was singled out as a cross-cutting topic that touches on several ongoing policies: the much-awaited Beating Cancer Plan, which highlights a shared risk factor between cancer, asthma, allergy and chronic obstructive pulmonary disease (COPD); the work on a ‘Renovations Wave’, where healthy indoor environments should be considered as key element; and even the EU Farm-to-Fork Strategy, given the effects agricultural emissions can have on human respiratory health. Further major EU initiatives are anticipated to support the human biomonitoring, in light of the EU’s explicit ambition for Zero Air Pollution by 2050.

Indoor Air Quality is another key priority, affected by multiple factors such as construction materials (also under discussion as we speak), and tobacco smoking. EFA has long advocated for the integration of indoor aspects in air pollution discourse to develop a comprehensive EU air quality framework.

Occupational exposure is another key factor in respiratory health. The inhalation of synthetic chemicals, mineral/organic dusts, and irritant gases or vapours at work contribute significantly to the development and severity of chronic airways diseases. Regretfully, this is a largely under-researched area until today.

Aside from HBM4EU, EFA is also contributing to the Advisory Board of the European Human Exposome Network. This is a group of 9 projects looking into the life-long consequences of human exposures to internal and external environmental risk factors.

At the start of October, the European Parliament voted to adopt an EU Climate Law with increased ambitions. The biggest news was MEPs calling for a 60% emissions reduction target by 2030, higher than the European Commission’s proposal of 55%.

What is the EU Climate Law?

The EU Climate Law will create binding obligations for the EU and its Member States to help the EU’s commitment to become climate neutral by 2050 become a reality. It sets out a 30-year framework and the direction for the EU and Member States to meet the expectations of the 2015 Paris Agreement.

The Paris Agreement is the landmark global framework to address climate change, reduce greenhouse gas (GHG) emissions, and limit global heating to 1.5°C. Negotiated within the United Nations Framework Convention on Climate Change (UNFCCC), it has been signed by 189 countries, except Iran and Turkey.

How the EU Climate Law can benefit patients with allergies and respiratory illnesses

Reducing GHG is essential to address the worsening impact of air pollution on people’s health. Air pollution affects everyone, and can cause or aggravate respiratory illnesses and allergies.

As a patient organisation for people with allergy, asthma and chronic obstructive pulmonary disease (COPD), EFA advocates for the reduction of air pollution in line with the recommendations from the World Health Organisation.

The EU Climate Law will also require:

• the phase out of fossil fuel subsidies by 2026;
• for the European Commission to propose a trajectory on how the EU can achieve climate neutrality by 2050,
• and a CO2 budget which limits the total amount of GHG missions allowed within the EU until 2050. This budget will also allow Member States to better share the responsibility as some are closer to climate neutrality than others, with achievable goals for all.

To monitor the progress of the law, the European Parliament proposes to create an EU Climate Change Council (ECCC). This would be an independent, scientific body to monitory progress and assess policy.

The next steps

The European Parliament is sending a clear message to the Council of the European Union, who will decide on the EU Climate Law when they meet in December. The Council is expected to support the European Commission’s proposals of 55% emission reductions.

EFA will continue to advocate for initiatives that take strong steps to reduce air pollution to create a better quality of life for all. Any climate legislation must include improved health as a key goal as the EU works towards achieving climate neutrality.

Learn more about the European Parliament Resolution on the EU Climate Law, EFA’s response to the Climate Change Adaptation Strategy and the F-Gases Regulation review consultation.

The 43^rd annual session of the Codex Alimentarius Commission (CAC) was held from 24-26th September, and 12th and 19th October. It will also take place 5-6th November. CAC is the international body formed by the World Health Organisation (WHO) and the Food and Agriculture Organisation (FAO) to set the global standards, guidelines and codes of practice for food safety. EFA Board and Codex Delegate Marcia Podestà attended all discussion sessions of the first virtual CAC meeting.

EFA is an observer to CAC since October 2019, where we represent the 17 million Europeans living with food allergies on issues related to Food Hygiene and Food Labelling.

During the 25 September agenda, one important issue for our community was the adoption of a Code of Practice  on Food Allergen Management for Food Business Operators. The document has been developed by the Codex Committee on Food Hygiene (CCFH) and to which EFA has contributed, welcoming the work on food allergens and the intention to develop guidance for food business operators on how to apply a proper, meaningful risk assessment for unintended allergen presence.

While this guidance will be essential for the health of consumers with food allergies, it could not go unnoticed that CCFH deleted the references to Precautionary Allergen Labelling (PAL) from the working drafts the code of practice. This reportedly happened because of other relevant procedures taking place in parallel that might affect the document, including an ongoing WHO/FAO expert consultation under CCFL.

Both during the consultation process and in the session, EFA reiterated its support to explicitly include in the Code important references to Precautionary Allergen Labelling and quantitative risk assessment. Such references are vital to create and enhance awareness so that the document is in line with the outcomes of the other processes currently being developed by CAC.

While the Code was adopted as it stood, the organisers acknowledged after our statement the importance of addressing allergens to protect public health after our statement given by EFA Policy Advisor Panagiotis Chaslaridis. They took note of this request with a view to future work on the document.

Our comments, letters and consultation papers, as well as the statement, are the result of the collective work by the International Food Allergy Anaphylaxis Alliance and the EFA Food Allergy Working Group.

You can access the full statement here.

For more information on our work on Food Labelling visit our Food Detectives project.

Digitalisation brings an enormous potential to improve health and care and the lives of patients. With new and emerging technologies, healthcare systems can shift from being disease-centred to being patients-centred.

The EFA Allergy and Respiratory Patients Conference will focus on the power of digitalisation and innovation to improve health services and empower allergy and airways diseases patients with asthma and chronic obstructive pulmonary disease (COPD) in managing their care.

Through insightful sessions, you will discover different digital and innovative tools in research and care that can benefit patients, by improving diagnostic processes as well as treatment and the prevention of allergy and respiratory diseases. We will look into policy, research and patient focus as enablers.

The event will take place over two days. The first day (Friday 23 October) is open to the all. EFA will present the latest innovations and developments in personalised medicine for allergy, asthma and COPD. We will also explore the challenges of digitalisation and how to overcome them. Join us to discuss how the patient experience can be improved through digitalisation.

The second day (Saturday 24 October) is reserved for patient organisations active in the field of allergy and respiratory, as well as for individual patients. We will hold thematic trainings and workshops to develop new skills and improve health literacy. Together we can understand the global challenges that the allergy and respiratory communities are facing.

Register now for free and engage in inspiring discussion with our speakers and experts from all over Europe.

You can find more information on the programme and the speakers here.

Launched in the midst of the COVID-19 crisis, the EU Pharmaceutical Strategy draft is an initiative that, along with the Beating Cancer Plan, tops the European Commission’s agenda in the area of health.

The strategy aims to address key aspects of access to medicines, enable digital health and innovation in general, and draw lessons from the COVID-19 experience to build preparedness ahead of future pandemics.

EFA participated in the 3-month questionnaire consultation representing people with allergy, asthma and COPD in Europe. We offered our views on medicine shortages, and the development and authorisation of innovative medicines.

We also provided our disease-specific perspective on other crucial elements of the consultation, such as the rise of digital health and the environmental aspects of medicines, highlighted below.

Access to medicines

EFA understands access to healthcare in a holistic way covering the following 5 elements (the so-called 5As): Availability, Adequacy, Accessibility, Affordability, and Appropriateness.

While medicine shortages may have multiple causes, they all share the same results: limited access to treatment, causing patients to miss the care they need. Unfortunately, today patient involvement in national pricing decisions is limited.

In our response, we offer several recommendations that will help the Commission anticipate shortages and address access to medicines in general. For example:
- A more harmonised approach to market authorisation among countries
- Increase the flow of information between the industry and EU/national authorities on potential shortages through transparent and accessible means
- Accelerate the roll-out of ePrescriptions across Europe to help healthcare systems plan in advance
- Consider the cost of drugs treating comorbidities, and its impact on patients’ quality of life
- Give a stronger voice to patients in processes such as pricing and reimbursement

Innovation in early development and authorisation of medicines

According to available data, the current EU budget for asthma and COPD research is dramatically disproportionate of the actual impact of the diseases.
EFA calls for an ambitious increase in research funding, along with a strategy that promotes synergies. In addition, EFA calls for a framework that facilitates market authorisation of innovative medicines and therapies.

The new Pharmaceutical Strategy should encourage the development of innovative medicines and therapies, among others, by:
- Adopting a cure-oriented pharmaceutical research approach based on increased funding and public-private collaborations with patients as key actors
- Encouraging medicine development that integrates patients’ real needs
- Proposing an enabling framework for innovative medicines and therapies
- Identifying a common understanding on the areas of unmet needs in the EU
- Streamlining standards for clinical trials for low-prevalent diseases, while supporting the conduct of ‘pragmatic trials’
- Supporting research on new and/or targeted treatments and therapies at the EU level

Digital health

EFA fully acknowledges the benefits of digital health and artificial intelligence in diagnosing, monitoring, and self-managing the disease. Equally, applications such as the Electronic Health Records and ePrescriptions can reinforce the cross-border exchange of data, significantly improving the life of patients.

However, we think that the promise of digital technologies cannot be viable if patients are not at the centre of disease management, data collection and digital use.

Environmentally sustainable medicines

Consistent with our principles that health and the environment go hand-in-hand, EFA has always supported the improvement of treatment choices to meet environmental requirements. For example, we have promoted the avoidance of unnecessary waste in the use of drug-device combinations, among others through recyclable devices.

COVID-19 pandemic and access to treatment and medicines

With regards to the challenges faced by chronic respiratory patients in accessing healthcare services during the COVID-19 pandemic, EFA noted the serious delays in several countries, often due to differences among regions or even among hospitals. This in turn resulted in long recovery times, or even total lack of access to specialist care.

EFA is full Member of the European Patients’ Forum and has contributed to the EPF’s submission to this consultation, which we fully support.

You can find EFA’s full response here.

EFA Member the Spanish Association of People with Food and Latex Allergy (AEPNAA) have created a guide for educational centres in Spain to understand food allergies and intolerances such as celiac disease or lactose intolerance. The guide has been developed in partnership with the Federation of Celiac Associations of Spain (FACE), the Association of Lactose Intolerant of Spain (ADILAC), and the Multi-Allergy, Atopic Dermatitis and Asthma Association (ATX-ELKARTEA).

The guide informs educational centres on how allergies occur, how to prevent them, and treat them. It also advices on different treatments, personalised diets, and protocols for kitchens, classrooms, and excursions. It will enable teachers to train and inform other students about food allergies and intolerances to create better understanding around this chronic disease.

Using this guide, educational centres will have at hand the tools to improve the quality of life of students who suffer from food allergies or intolerances. The overall objective is that students are better supported in managing their allergies in a safe environment.

The guide is already available to download here.

EFA Member Asthma-Allergy Denmark has contributed to a study which reveals how peanut allergy affects the psyche. The study explored how limitations in everyday life, stress, frustration and isolation are part of life with peanut allergy. Participants of the study said they experience limitations that affect their lives when it comes to food. This includes workplaces, parties, social life, holiday destinations and activities, even when traveling by public transport. The study intends to make creating initiatives that provide a better understanding of peanut allergy and the social impact on sufferers, easier.

Visit Asthma-Allergy Denmark website for more information.

Longfonds have supported a study by LUMC where scientists are investigating how lung tissue reacts to the coronavirus. This research uses a so-called Long Fibrosis Chip, a small device that mimics a piece of living lung tissue, allowing the effects of the virus on patients to be simulated. The device will enable researchers to understand the specific effects of COVID-19, and whether it infects the respiratory tract differently than other (corona) viruses. The results will help scientists better understand the long-term impact of COVID-19 and its damage to lung tissue, as well as to test antiviral drugs.

Visit Longfonds website for more information.

Vaping and vaporising is no longer allowed in public from 1 July in the Netherlands, as part of an extension of the smoking ban to include e-cigarettes. This will apply to cafes, restaurants, workplaces and public buildings where previously the smoking ban applied but e-cigarettes were allowed. A mini-documentary was released which explores the unknown consequences of e-cigarettes and talks to young people, who are likely to use e-cigarettes, about their experience with vaping.

17^th September is celebrated around the world as World Patient Safety Day. Organised by the World Health Organisation, the day is used to advocate for public engagement in healthcare and to enhance public safety. The overarching principle of the day is: First, do no harm.

2020 has brought recognition to the hard work of healthcare workers, who have worked tirelessly to care for people during the COVID-19 pandemic. It has also created huge pressure on healthcare systems around the world as the health crisis continues.

Healthcare workers cannot only be knowledgeable and skilled to handle caring during a pandemic, but also must be protected themselves as they care for patients. Healthcare workers are at huge risk of contracting coronavirus themselves, and suffer from risk, isolation and stigma.

They are also dealing with huge amounts of pressure and stress to keep the healthcare system working as we fight a pandemic.

That is why for 2020, World Patient Safety Day is a day to “Speak up for health worker safety!"

On the 17^th, advocates brought to light the connection between health workers and patient’s safety, as the two go hand-in-hand.

To celebrate the day and show thanks to healthcare workers worldwide, buildings around the globe were lit up in orange, and people took to social media in true 2020 style to campaign on the day.

At EFA, we are a patient-led organisation and work with healthcare workers to support innovation and patient-centred care in health. That is why we took part to give our thanks to healthcare workers for all they have done to protect patients, especially as those with airwaves conditions are at high-risk to COVID-19.

🗓️Did you know today is #PatientSafetyDay2020?

At EFA we advocate for disease #prevention, better #protection and good #communication with healthcare professionals https://t.co/Qo7lnKIna0

Health worker safety is a priority for patient safety! 🩺#InformPreventCare pic.twitter.com/Oqh6YRh0GL

— EFA Patients (@EFA_Patients) September 17, 2020

More information about World Patient Safety day here.

Although this year it was particularly difficult to choose among the variety and intense 4 full days programme at the 2020 European Respiratory Society Congress,  EFA delegation of 8 people attended a selection of interesting sessions. We followed those discussing the latest findings on research, disease prevention and management to Inform, Prevent, Care for allergy and airways diseases such as asthma and chronic obstructive pulmonary disease. Here are our highlights!

Congratulations to ERS for such a quality gathering both in terms of content and in format. We especially appreciated your effort to allow patient advocates access the scientific sessions. That’s #ShowLeadership!

INFORM

Sars-CoV-2 COVID-19 pandemic

With a full day on COVID-19 the ERS Congress highlighted that Sars-CoV-2 is, above all, a respiratory disease. It was interesting and relieving to learn from world top lung clinicians that:

• Asthma per se does not lead to a severe COVID-19 infection requiring hospitalisation. Certainly, asthma patients are more fragile against the virus if they get it than healthy individuals but research shows that mortality rates due to coronavirus are not higher among asthma patients.
• However, patients under oral corticosteroids are more vulnerable if infected by COVID-19 because of their disease severity and control is worse and also because of the secondary effects of thistreatment.
• COPD and smoking are associated with a higher increase of COVID-19 severity and mortality, while the proportion of patients with COPD or smokers has been low among all patients.
• It seems that as a consequence of a COVID-19 infection, some patients develop post-pulmonary fibrosis. More research is needed to see the prevalence and to support these patients.
• The World Health Organisation informed they do not consider COVID-19 to come in waves, the virus is not seasonal, but rather the same strain has been continuously present, and the decrease of incidence during the summer was a consequence of the control measures adopted by countries.

PREVENT

Origins of respiratory diseases: early-life  

Several environmental risk factors occurring in early life (or even pre-natal, before birth) have been linked with lung function decline such as smoking parents and exposure to tobacco smoke and air pollution. Early life is important for lung health:

• Exposures of previous generations to dangerous substances e.g. certain disinfectants may impact the development of asthma in children, while exposures in pregnancy may impact several generations. Meanwhile, exposures during early puberty seems also key.
• Indoor air particulate matter (in moisture-damaged houses) impact the genes of the airways, leading to the activation of immune-defence related genes in human airways, which can lead to the person developing health conditions relating to their airways.
• Other medical history aspects such as parents with asthma, respiratory infections during childhood, and prematurity are found to increase the risk of chronic pulmonary disease in terms of cause, timing and severity. Paediatricians have a key role to mitigate the risks children face and that might impact developing asthma or COPD later on.
• We should help people to reach maximum lung capacity early in life. In fact when people with lung disease are asked whether they were born pre-term, surprisingly many have.
• Stopping asthma treatment during pregnancy can lead severe exacerbations and among others a lower birth rate for the child.

Exposure in the workplace and respiratory disease

• COPD and bronchitis have strong indications that workplace inhalational of hazardous substances contribute substantially to the burden of COPD. Occupational asthma bears a heavy burden too, with more than 400 risk agents identified. Exposome research can help better understand the full scale of this preventable burden.
• There is a possible connection between the exposure of foetuses to heavy metals and the risk of developing asthma and allergic diseases early on. The results mainly referred to cadmium, which is present in batteries and tobacco. There is also a relationship between platinum salt and respiratory sensitisation in refinery workers.
• The European Lung Foundation and the European Respiratory Society have developed an online tool allowing workers to assess whether their work poses a risk for their lung function.

Advancing tobacco control and cessation

Tobacco and vaping are harmful to health, and yet they are addictive. People wishing to quit, especially if they live with a respiratory disease, should be able to receive expert guidance and medical support.

• From a product perspective, e-cigarette liquids were shown to be chemically unstable and to generate potent irritants for the user.
• Evidence shows that passive vaping can trigger acute inflammatory responses in the lungs of COPD patients, which suggests that e-cigarette emissions are not merely harmless vapour but may have an actual impact on health.
• An analysis of the flavour content of a certain e-cigarette brand across the US, the EU and Canada confirmed that menthol facilitates smoking initiation and continuation. Researchers advanced that it is important to include synthetic coolants in legislation, as they have the same effect as menthol, which is now banned in the EU Tobacco Products Directive.
• The immediate past Chair of the European Lung Foundation and EFA Member delegate Isabel Saraiva offered compelling details of her personal story with smoking cessation. It only became possible for her through the life-saving and timely consultations with medical professionals. She lives with COPD.
• Monica Fletcher from the Asthma UK Centre for Applied Research made a strong case for patient engagement at all levels, including in the planning of smoking cessation services, writing of guidelines and strategies, developing public health initiatives, and educating healthcare professionals and policymakers.
• Smoking cessation training should be integral in medical curriculum at all levels. Doctors can offer valuable services through new types of interventions based on brief advice, support and treatment.
• Heated tobacco releases compounds found in conventional tobacco cigarettes. These include carbon monoxide (CO), polycyclic aromatic hydrocarbons (PAHs) and volatile organic compounds (VOCs). Therefore, claims by the industry that these are smokeless products, aside from being false, may also undermine indoor-smoking bans.
• There is insufficient evidence that e-cigarettes are more effective than existing smoking cessation medication. Pragmatic trials on e-cigarette use showed low quit rates. While this indicates that it can even undermine smoking cessation, many users seem to use e-cigarettes as a supplement, rather than a replacement, to conventional cigarettes.

CARE

Diagnosis, management, adherence and digital health  

• Primary care is at the forefront of early diagnosis, which matters in order to preserve lung function, preserve quality of life, encourage smoking cessation, earlier interventions to prevent exacerbations, reducing cost and decrease mortality
• There are large differences in the ease of use of inhalers among COPD patients and an absolute need for counselling from healthcare professionals when some inhalers are prescribed for the first time. The problem arises when in fact doctors are not trained themselves
• Evidence shows that while intensive training on inhaler use increases adherence, after this follow up is terminated, the technique is not maintained and patients often go back to their old habits indicating the need for new patient centred strategies for self-management
• The right inhaler technique improves patient condition and quality of life. Poor adherence to treatment and poor technique is linked to increased mortality
• Overuse and reliance on short acting medication (SABA) in asthma, instead of the maintenance treatment can lead to increased exacerbations and mortality regardless of whether it is combined with long acting inhaled corticosteroids (ICS). There is a need to study the impact of this overuse in asthma control. The newest update of the GINA, Global Initiative for Asthma guidelines help to clarify the use of SABA.
• Evidence from the use of an electronic application had positive results in early detection of symptom worsening. This can help prevent exacerbations and hospitalisations. A model developed to predict asthma exacerbations highlighted the importance of comorbidities in the prognosis of asthma.
• One study explored the nurse service developed by Asthma UK and British Lung Foundation which uses Whatsapp instant advice for patients living with asthma. Users in the UK gave very positive feedback, as it improved their confidence in managing their asthma. These outcomes have significant implications for future care delivery, with virtual consultations proving a popular and effective tool to reach younger patients.
• Chronic cough can be linked to lung diseases, nasal/throat or gastro-intestinal diseases, smoking, occupational or environmental risk factors, but it also exists without. While it is important to look at the different treatable traits, the current treatment is focusing on testing different medicines that may help. The nomenclature, the definitions and what a chronic caught or refractory cough is called is unclear and new diagnostis methods are needed, and novel methods such as cough monitoring systems can be used
• The evidence on the usefulness of targeted digital COPD patient exercise support programmes is increasing. COPD diagnosis and the use of spirometry remain problems and while it is important to promote existing tools, new innovation is needed. During COVID-19, spirometry was scaled down because of risk of infection.
• The future to improve lung care is a person-centered, personalized approach, supported by digital technology

The CURE project is now in its third year of research, entering a period of evidence production. On August 4^th, the first publication steaming from the project research was released, revealing an association between the changes in the respiratory microbiome and the disease state of asthma. 

The results show that preschool children with asthma have a reduced level of bacteriophages in their airways in comparison to healthy individuals.

Given that bacteriophages are important regulators of the microbiome, their underrepresentation leads to an ecological imbalance of the respiratory tract. This compromises the resilience of the respiratory system towards asthma exacerbations.

At the same time, the level of certain viruses is higher among asthma patients, which increases the chance of a symptomatic infection or sustained inflammation.

“A central hypothesis of the project is if it will be possible to influence the microbiome so as to control inflammation in the respiratory tract in asthma. Unlike antibiotics, bacteriophage therapy can be used to target individual bacteria with high specificity.” - Prof. David L Robertson

You can read the publication here and the interview with Prof David L Robertson about the role of the microbiome in asthma here.

As an active member of CURE asthma, EFA is responsible for the project’s communication and dissemination activities. Amongst others, those include the publication of external newsletters, development and dissemination of informational materials and interviews to CURE partners.

Through ImmUniverse, EFA is involved in research aiming at improving diagnostic and therapeutic options for patients living with immune-mediated inflammatory diseases, including atopic eczema and ulcerative colitis. In ImmUniverse, EFA brings the perspective and voice of atopic eczema patients.

Setting up a Patient Input Platform

Together with EFCCA (the European Federation of Crohn’s and Ulcerative Colitis Associations), EFA is building an efficient and informed dialogue between researchers and patients, to guide clinicians respond to patients’ needs throughout the project.

EFA and EFCCA are currently establishing a Patient Input Platform composed of atopic dermatitis and ulcerative colitis patients to help ensure a patient-centric approach across the research. The expert patient will advise on clinical research procedures, support the interpretation of research outcomes, and assist in disseminating the results.

Keeping patients informed

EFA is also involved in the Communication Committee that has been created to facilitate project communication and dissemination activities, including  the ImmUniverse’s website. One key feature of the website is the “Patient’s Voice” section, dedicated to atopic eczema and ulcerative colitis patients,.

The ImmUniverse project is funded by the Innovative Medicine Initiative (IMI), a public-private partnership between the European Commission and the European Federation of Pharmaceutical Industries Associations (EFPIA) to advance health research and innovation.

More information on the ImmUniverse project can be found here.

3TR is a high-end research project that aims at improving treatment available for asthma and COPD. Funded by the Innovative Medicine Initiative (IMI), it studies patients’ response to treatments, with the goal to move closer to personalised therapies. EFA has facilitated the creation of a Young Respiratory Patient Working Group to inform the researchers in the project.

The researchers from 69 partners involved in 3TR are working to identify biomarkers and molecular mechanisms that could explain the response (or non-response) to treatment of seven immune-mediated, allergic and inflammatory diseases, including asthma and COPD.

The results of the project will represent a step further towards personalised therapy that will improve asthma and COPD management.

EFA brings the asthma and COPD patient perspective to 3TR

Alongside other disease specific patient groups partnering in the project, EFA’s role in 3TR is to providing the asthma and COPD patients’ perspective throughout the research conducted in 3TR.

To have the patient’s voice at the very centre of this project, EFA setup a Respiratory Patients Working Group (RPWG) with the European Lung Foundation (ELF). Today, there are 16 asthma and COPD patients involved in the RPWG, who provide fundamental advice and revise protocols.

The group has participated in a Delphi exercise to help identify relevant patient-centred biomarkers to define asthma therapeutic response and wellbeing. Having patients among the mostly clinical experts involved is a crucial step in ensuring that patients’ experiences and views are taken into consideration. The results of the exercise will guide 3TR researchers to identify the relevant response in treatments.

Including the young patient’s perspective

In the past few months, EFA has also facilitated the creation of a Young Respiratory Patient Working Group that brings together young asthma patients to enlarge the patient representation and perspectives throughout the project.

The 3TR project is funded by the Innovative Medicine Initiative (IMI), a public-private partnership between the European Commission and the European Federation of Pharmaceutical Industries Associations (EFPIA) to advance health research and innovation.

More information about the 3TR project can be found here.

In September EFA participated in the Inception Impact Assessment consultation launched by the European Commission Directorate General for Climate Action to review the current Fluorinated Greenhouse Gases Regulation.

Some F-Gases, as they are commonly known, are an important element of asthma and COPD liquid inhalers, as they act as a propellant to quickly release the liquid medication into the lungs effortlessly.

pMDI is 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.

F-Gas based inhalers are mainly prescribed to patients who, due to their young age (children), old age (older people) or their disease severity (severe stage of pulmonary obstruction), encounter difficulties breathing in deeply from dry-powder inhalers, which are F-Gases free.

EFA advocates that tackling climate change and air quality indoors and outdoors is crucial to reduce worsening symptoms and mortality of allergy and airways diseases. There is, however, a pressing need to tackle asthma and COPD care in Europe. Patients across Europe report preventable hospitalisation, overuse of relief medication, and lack of self-management plans.

Treatment choices can and should be improved to meet environmental requirements. 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). EFA calls for fully integrated health considerations, as well as patient care concerns, into all future EU climate actions. This way the access to the care that patients need is not compromised, as that would be against their health, and would impact their social and fundamental rights.

The review of the F-Gases regulation is part of the European Green Deal, the landmark initiative of the European Commission to make Europe climate neutral by 2050. The initiative entails the review of many policies affecting the planet.

Allergy, asthma and COPD patients are directly impacted by climate change and air quality. The weather-related events and impact on biodiversity and plant life cycles are directly linked to worsening and onset of allergy and respiratory symptoms, and even death.

EFA thanks all members involved and the GAAPP for having endorsed our position as the global community.

In 2020, EFA has contributed to the ongoing review of the food (Farm to Fork) and the climate change (adaptation) strategies.

The full EFA response to the F-Gases inception impact assessment consultation can be found here.

The 2020 EADV Congress will take place from the 29-31 of October, as a global virtual event. Do not miss EFA’s session on the socio-psychological burden and the positive aspects of atopic eczema for patients and their families.

While the general programme will cover topics such as inflammatory skin diseases, cutaneous oncology, infectious diseases, dermoscopy, hair and nail disorders and pediatric dermatology, EFA’s session will be focused on atopic eczema, also known as atopic dermatitis.

Our session will be broadcasted on the 29^th of October at 8:30 am. In line with World Atopic Eczema Day 2020, patients and families are at the core of the EADV webinar session. We will address what living with atopic eczema means for families with children affected by atopic eczema and how it affects their daily (family) life, to answer to the question “How do YOU care for atopic eczema?”.

Together with patients, caregivers and healthcare professionals, we will provide an insight into how families care for their children, how they experience their relations with healthcare professionals and we will elaborate on how a collaborative approach can improve the patients’ Quality of Life. During a roundtable, our panellists will respond to the key messages shared by patients and carers in our podcast series on atopic eczema “Skin in the game”, and the realities we portrayed in the AtopicalLives exhibition.

EFA will be also present with a virtual booth in the Patient Society Village. Despite the virtual format, the attendees will be able to stop by and interact in real time with us, to ask for information and updates on EFA’s work. Through the Patient Society Village, we will showcase our advocacy for change for all people with allergy and airways diseases, focusing onn atopic eczema, we will meet with healthcare providers and other patients organisations and discuss  advocacy.

The Patient Society Village is the perfect platform for patients’ representatives to interact with health care professionals and discuss roles, needs and activities of common interest. We will be thrilled to meet you there!

You can find more information on the EADV congress and how to register here, and check the full EFA event programme here.

We are stronger together! On 14th September we celebrated World Atopic Eczema Day. The day connected patients, caregivers, healthcare professionals, and public health advocates across Europe to build a momentum through asking “How do YOU care for atopic eczema?”

Thank you for the strong engagement on social media!

Putting the spotlight on family life with atopic eczema, the day was organised by EFA and the GlobalSkin. To accommodate restrictions due to the COVID-19 pandemic, World Atopic Eczema Day 2020 was a global virtual event. This did not stop people taking action to spread the message and welcome more to the community.

EFA was inspired to see the great engagement of our Members at national level, our audiences and the online community. Joining the conversation using #AtopicEczemaDay and #CareforAtopicEczema by the end of the day, more than 389,123 people had seen EFA’s messages leading to 2,562 visits to our toolkit page. Globally, more than 290 messages had been published in connection with World Atopic Eczema Day.

Atopic eczema patients’ stories

EFA launched an atopic eczema podcast series telling the stories of two people whose lives are affected by atopic eczema. Marking the day, the podcasts provide deep and personal insight into what living with atopic eczema actually means for those affected and their family members. The genuine stories have reached more than 600 users and you can listen to them yourself.

The #AtopicalLives video was translated into 8 languages to reach more people to educate about atopic eczema and its impact on patients’ lives. You can watch the video in English, Spanish, Italian, French, German, Dutch, Finnish, and Danish.

Family life with atopic eczema is…

EFA and GlobalSkin created a toolkit in 12 languages with shareable materials for social media, including cards and printables. The materials spread across Twitter, Facebook and LinkedIn as patients and patient groups, public health organisations, and medical societies spread the message (and even translated into more languages!)

More information on World Atopic Eczema Day can be found on our campaign webpage here.

EFA thanks sincerely our Sustainable Corporate Partners AbbVie and Sanofi-Regeneron Alliance for their support for this project.