EFA Manifesto presented by ABBA in Bulgarian Parliament
On 22 November, Association of Bulgarians with Bronchial Asthma, Allergy and COPD (ABBA) presented EFA Manifesto for the European Parliament Elections 2014 in the Bulgarian Parliament. Professor Yavor Ivanov, Chairman of the Bulgarian Society for Pulmonary Diseases, presented the viewpoint of pulmonologists in Bulgaria. Diana Hadzhiangelova, Chairman of the ABBA presented the actions and policies conducted from the perspective of a patient organization. ABBA familiarized MPs with the EFA Manifesto and the actions that were taken in the European Parliament, as well as some of the main priorities, namely the adoption of a national strategy for prevention and control of chronic obstructive pulmonary disease and allergies. MPs proposed to create a working group in Parliament in which would take participation representatives from Ministry of Health, National Health Fund, patient organizations and experts. With the support of Dr. Niyagar Dzhefer, Chairman of the Parliamentary Health Committee and Dr. Tanya Andreeva, Minister of Health set up a working group at the Ministry of Health for the development of a draft national program for asthma, allergic rhinitis and COPD. The working group will involve experts from the Bulgarian Society of Allergology and Bulgarian Society for Pulmonary Diseases, representatives from the Ministry of Health and from ABBA, which is the only patient organization that protects the interests of those suffering from asthma, allergies and COPD. Deadline for developing the draft of the national program is the end of March 2014 and then the Council of Ministers should vote on the programme in order to obtain the necessary funding. Österreichische Lungen-Union marks World COPD Day During the EFA COPD Working Group, which took place in EFA’s office in Brussels on 27 November, Österreichische Lungen-Union’s Managing Director Otto Spranger briefly explained how they commemorated this year’s World COPD Day. Their organisation achieved the roll-out of oxygen stations to refill tanks for patients in Austria, paid by industry partners with pharmacies also doing it for free. This initiative was kicked-off in Vienna, where oxygen was provided by two pharmacies with employees working nightshifts to make oxygen available for patients at all hours. FFAIR helped COPD patient to feel like a winner of Tour de France The patient with COPD and respiratory insufficiency, FFAAIR (Fédération française des associations et amicales de malades insuffisants ou handicapés respiratoires) member climbed the highest road pass in the Bouches-du-Rhône by bike under oxygen. The summit is regularly used by amateur and professional racing cyclists. It was the result of the work of a big team which included doctors, physical coaches and even a former stage winner of the Tour de France, Christian Seznec. Find more information on the Facebook page of the event (in French) News from Portuguese member RESPIRA Since the month of November month of COPD (with the World COPD DAY on 20 November) - RESPIRA was engaged in a lot of activities in Portugal. Partnership was established with a pharmacy chain Farmácias Holon with more than 100 pharmacies around the country where the RESPIRA will provide free spirometries till the first week of December. This will be accompanied by a large promotional campaign with informative posters in every pharmacy and the RESPIRA’s leaflets” Respiratory Rehabilitation” and “ Do you know COPD ? ” will be distributed during this period. In partnership with a cinema chain and a City Hall, RESPIRA promotional advertisement “COPD DOESN’T LET US” was aired before all cinema sessions (except children sessions) between November 13 and 20. Isabel Saraiva from RESPIRA attended as a speaker the International Conference on Tobacco Prevention and Control - ICTPC’13. The topic of the session was “What can be done by a smoker with COPD – The patient Perspective “. Maria Luísa Gentil Soares Branco, RESPIRA President, was very active in interviews and speeches on COPD presented in several mass media FENAER informs you about the activities executed in November On World COPD Day, the FENAER’s member association located in Madrid took part in the activities organized by NEUMOMADRID for the World COPD Day along with APEAS (COPD and Sleep Apnea Patients’ Association), ALFA I (Affected by Alpha-1 Antitrypsin Deficiency, and their relatives association) and AFEFPI (Association of patients of Idiopathic Pulmonary Fibrosis, and their relatives). A COPD information and awareness campaign was done. The awareness campaign consisted of information tables where materials about COPD were delivered, and all those people who were wishing it could make a spirometry testing. During the morning, from 9:30am to 2:00pm a nurse or a doctor was in each of the tables to perform this activity. 13 hospitals in Madrid participated in this campaign. In Málaga, ALERMA’s (Allergic and Respiratory Patients of Malaga association) president Victoria Palomares and COPD patients were interviewed by local TV to inform about the COPD and about the activities done in Malaga for the World COPD Day. The World COPD Day in Málaga was marked by significant awareness campaign. ALERMA celebrated the World COPD Day by installing an Informative Table in the hall of the VIALIA Mall. From 10:00am to 2:00pm they performed spirometry testing, and informed about the disease, delivering COPD information leaflets. Spirometry testing was performed by a pulmonologists from the Hospital Universitario Virgen de la Victoria of Málaga. FENAER also had a workshop on asthma for teachers in Madrid. The program was designed for school teachers, caregivers and other educational professionals interested in the asthma control with the objective to improve a better understanding of the asthma, and a better control of students with asthma through an early detection of symptoms. Combining both theory and practice, the topics covered at the workshop were: allergic and not allergic asthma, the asthma treatments, how to use inhalers, evaluation of the asthma attack severity, what to do with asthma in the school and asthma self-care. EFA Call to action campaign FENAER has also created a video in Spanish to promote EFA’s Call To action to Raise Awareness, Relieve the Burden of Respiratory Allergies in Europe. You can watch the video here. The Asthma Society of Ireland joins with the Irish Lung Health Alliance hosting public talks to promote health and highlight the high incidence of respiratory illness in Ireland Ireland has faired poorly in a new report on European lung health. The European Respiratory Society's European Lung White Book, which was published in September, lists Ireland amongst the countries with the highest prevalence of asthma in adults. Ireland also has a very high adult mortality rate for asthma and is at the top of the European table after Serbia, Albania, Azerbaijan, Uzbekistan and Kyrgyzstan. The picture is equally worrying for childhood asthma, with Ireland listed in the countries with the most cases of childhood wheezing and asthma. Sharon Cosgrove, CEO of the Asthma Society of Ireland, commented “These figures show that Ireland remains a problem area for asthma in Europe. We score very high for both prevalence of the disease, and mortality rates, when compared with other European countries. Asthma is the most common chronic disease in Ireland and there is an urgent need for a comprehensive State strategy to tackle the enormous problem of asthma in this country. The Asthma Society has been advocating for the implementation of a National Asthma Programme, which would provide improved screening, services and support for people with asthma. Asthma is a disease which can be well managed and have limited impact on people’s lives; but action is required to ensure that Irish people are getting a quality of care that is equal to other parts of Europe.” The Asthma Society of Ireland joined with fellow Irish Lung Health Alliance members the Alpha One Foundation, the Irish Thoracic Society, Cystic Fibrosis Ireland, the Irish Sleep Apnoea Trust, COPD Support Ireland, Irish Sarcoidosis Network, Irish Lung Fibrosis Association, Pulmonary Hypertension Ireland, the Irish Cancer Society and ASH Ireland, to promote better lung health in response to the European report. The groups organised a series of public lectures throughout Ireland in November to promote better lung health. The talks focused on the importance of exercise for keeping lungs healthy, with speakers including respiratory physicians, paediatricians, physiotherapists and patients. With 1 in 7 people in Ireland having an undiagnosed lung condition and Ireland having the third highest death rate from lung disease in Europe, causing 1 in 5 deaths, it is vital that people know how to maximise their lung health by taking simple steps, including regular exercise and avoidance of environmental exposures that damage the lung. Ireland has the lowest number of adult and trainee respiratory physicians at 1.3 per 100,000 while the mean for Europe is 4.4 per 100,000³. In addition, recent research carried out by the Irish Lung Health Alliance adds further to this picture by showing that 1 in 7 people have an undiagnosed lung condition. “Clearly the state of Ireland’s lung health leaves much room for improvement,” said Dr Edward McKone, Respiratory Consultant and President of the Irish Thoracic Society. “Our high prevalence, death and hospital admission rates, coupled with high levels of undiagnosed lung disease can be attributed to a number of factors, but awareness of how to prevent and manage lung disease and identify early warning signs is key.” “We tend to associate exercise with cardiac health, losing weight or preventing diabetes but exercise is also very important for the lungs whether you are healthy or have a lung condition. We would encourage the public to attend our information events to learn more about their lungs and the simple steps they can take to maintain lung health,” added Dr McKone. About the Irish Lung Health Alliance research: The Irish study conducted by the Irish Lung health Alliance and presented to the Irish Thoracic Society Annual Scientific Meeting is based on a survey of members of the public who availed of free lung function tests as part of an awareness campaign organised by the Irish Lung Health Alliance in 2012. This research was based on data from 10 sites that offered Spirometry (lung function tests) to members of the public. Analysis was carried out using survey questionnaires and lung function test results on 515 participants. About the European Report – The European Respiratory Society's European Lung White Book (published Sept, 2013) 1 http://www.erswhitebook.org/chapters/the-burden-of-lung-disease/ 2 http://www.erswhitebook.org/chapters/#pagesPARTCMajorRespiratoryDiseases ³ http://www.erswhitebook.org/chapters/medical-respiratory-specialists/