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EFA Member News

EFA’s Alignment Meeting with the Maltese Asthma Society

On the 28th of September, EFA’s President Breda Flood along with Executive Officer Susanna Palkonen and Membership & Programme Officer David Brennan had the opportunity to meet with the representatives of the Maltese Asthma Society (MAS) in St Julian’s, Malta. Since EFA does not have a member in Malta yet, this meeting served to present both organizations’ goals and objectives in view of creating the possibility for the representation of Maltese people with allergy, asthma and COPD in EFA through a Maltese membership.

The Maltese Asthma Society was established in 2004 by Professor Stephen Montefort and it was originally intended to eventually pass over control of the organisation to asthma patients after initial years in building membership and objectives. The organisation has a committee of 8 asthma patients and 1 non-patient as the main governmental organ; however, the organisation has no office and holds public meetings at Mater Dei Hospital, which is the only one in Malta.

Current chair of the Maltese Asthma Society, Mr. Stephen Healey pointed out during his presentation that approximately 40,000 people in Malta’s total population of roughly 400,000 have a respiratory disease, which can be credited to an abundance of dust, pollen and air pollution. As a result, there is one of the highest rates of people with respiratory diseases proportionally to its total population in Europe.

During the meeting, the representatives of Maltese Asthma Society expressed the most concern for the mentality of Maltese people with regards to asthma more broadly in society. All participants from Malta agreed asthma is a stigmatised disease and Maltese people with asthma are rarely willing to admit they have the condition publically. This leads to the fact that asthma patients in Malta are usually passive and they are less inclined to ‘give’ time or invest in proper education on asthma treatment.

In addition, EFA learned that there is no national asthma programme in Malta, but that generally there is very good access to asthma treatment but there can be high prices for the asthma medications used in Malta. These medications are often available for half or a third of the price in countries like France or Italy. The pharmaceutical companies explain this phenomenon by Malta being by default a “small market.” However, this problem is generally problematic for the healthcare system in Malta, and not limited to asthma treatments.

In addition, a Maltese Eczema Society was acknowledged to exist, which may present for an opportunity to create an umbrella organisation for allergy and asthma in Malta, whether a formal or a coalition for collaboration. EFA welcomes these societies to work together and identify areas for future collaboration or even merger if possible. During discussions, both COPD and food allergy were also mentioned, however it was acknowledged neither have official patient organisations to date.

The meeting participants expressed interest in collaborating with EFA in the future and consider the possibility for membership to be beneficial for their association for a variety of reasons.

To see the presentation given by Breda Flood and David Brennan, please click here

 

EFA Meets Association of Portuguese Asthmatics (APA) and Presents at the Annual Congress for the Portuguese Society for Allergology and Clinical Immunology

EFA representatives met various representatives from its member APA, who were present at the annual meeting for the Portuguese Society for Allergology and Clinical Immunology to share updates of recent activities and achievements. EFA presented its past year of activities and answered questions from APA representatives about them. In their discussions with EFA, APA showed video clips of local public awareness campaigns for students when they play sports. The organisation members also shared their experiences in working with the Portuguese national programme for asthma, which they noted as having positive outcomes. Nevertheless, there was concern for its discontinuation and the start of a broader national programme for respiratory diseases because other disease areas could receive more attention. EFA agreed with APA the national programmes with a specified disease are preferred to assure efforts are focused for each disease area respectively.

 

Fast check for allergic consumers

Stichting Voedselallergie and Wageningen UR Food & Biobased Research are currently developing the Allergie-Checker, an app that helps allergic consumers with their day-to-day shopping and makes it easier for them to make safe choices.

People with allergies do not always find food shopping easy: the letters on the labels tend to be very small and the important information is not available at a glance. But a number of partners are now developing the Allergie-Checker, an app that will make allergy information more accessible and convenient by tuning in to the personal profile of allergic consumers.

The partners in the project are: the Netherlands Nutrition Centre, FoodShopper, caterer Sodexo, Jumbo Supermarkets, LEI Wageningen UR and IT developers Noldus, Q-Ray and Mobihealth. People with allergies are closely involved in developing the app to make sure it will meet their needs and expectations.

How does it work?

The app for a smartphone or tablet/computer enables users to compile a personal profile per family. Allergic consumers can indicate the allergens that cause problems in their profile, their level of allergy (product contains the allergen or product contains traces of the allergen) and how they want the information to appear (what can or cannot be eaten). The information that the user is given about the suitability of a product is entirely in line with the profile that has been entered.

Consumers use their smart phone to scan the barcode on the packaging and obtain information about the product’s suitability. They can also search for product information at home to make shopping even easier.

Databases

The app has been developed using information from the Netherlands Nutrition Centre food database and databases from Jumbo Supermarkets and Sodexo. The Allergie-Checker currently comprises product information relating to almost 30,000 items, and the designers hope to expand the sources of information on an ongoing basis. A separate interpretation layer is used to interpret the data in the databases and combine the information. This allows new databases to be added without the need for new software. New functionalities can also be introduced without too many modifications to the app’s software.

User-friendly

The app is fast and provides instant information about the allergens in the product. A number of psychological principles have been used to make the app user-friendly and intuitive: the Allergie-Checker provides information at different levels and in various presentation styles, but is always very clear about the origins of the data.

Prototype

Food & Biobased Research presented the prototype of the app on 12 October during the Stichting Voedselallergie family day. This prototype will be tested by a group of allergic consumers in November of this year, and their experiences will be incorporated into the ongoing development of the app.

To find out more click here

 

Allergy and asthma costs calculated in Finland

The Finnish Allergy and Asthma Federation has made an extensive research on allergy and asthma costs in Finland. Results were published in September, and the research got wide media attention on national level.

According to the study, total allergy and asthma costs (2011) are 1,3 – 1,6 billion euro. Indirect costs, meaning e.g. absences from work, lower working efficiency and early retirement, form 80 % (1,0 – 1,3 billion euro) of all the costs.

Allergy or asthma cause annually around million days of absence in Finland. However, these sicknesses don’t automatically mean high amount of absences on individual level. Only every tenth allergic and every fourth asthma patient has been off from their work because of allergy or asthma, says PhD Juha Jantunen from the Finnish Allergy and Asthma Federation. He carried out the study with the help of steering group formed by the health care professionals.

According to the study, direct allergy and asthma costs are 314 million euro in Finland. Medical costs form 57 % of the direct costs. Other direct costs are e.g. health care and hospital expenses, rehabilitation and special meals provided for the allergic kids at schools. Most of the direct costs (65 %) were related to asthma.

Most of these sicknesses are not severe in Finland, and they are well managed with the correct medication. Study shows that the medical costs and the amount of medical reimbursements are growing, says Juha Jantunen from the Finnish Allergy and Asthma Federation.

 

Would you like to have more information on the Finnish study? Please, contact Juha Jantunen,  juha.jantunen@allergia.fi

 

FENAER Commemorates Multidisciplinary Day of Respiratory Apparatuses and the World Week of Idiopathic Pulmonary Fibrosis

Patients with allergy, asthma and other respiratory diseases often find themselves sensitised to chemical products for beauty and sanitation, have difficulty in understanding how to use their inhalers, search on the internet for information which should come from medical professionals and attempt to find alternative medicines to improve their conditions. On October 22nd, in Málaga, were informed by EFA member FENAER, and its local member ALERMA, and invited to ask questions regarding their conditions and understand new ways to help improve their quality of life. The topics covered by presentations were:

  • The use of homeopathy for people with respiratory diseases
  • How to use the internet responsibly as a source of information
  • Managing the use of inhalers
  • Products of personal hygiene and sanitisation for people with allergy and asthma

 

From the 21st until the 29th of September, FENAER participated in a diverse number of informative and awareness activities for the seriousness of Idiopathic Pulmonary Fibrosis (IPF) in meetings with patients, medical specialists and doctors. Together with other partner organisations, FENAER organised a press conference to present the current situation of the disease and its patients in Spain. A press release was circulated on the 23rd of September to commemorate the World Week of IPF and it included a call from IPF patients for equality in access to existing pharmaceutical treatment. IPF is a predominant variety of pulmonary diseases affecting people between the ages of 40 and 80 with a survival rate of 2 – 5 years after initial diagnosis, a much higher mortality rate than even some varieties of cancer. For this reason, the partners argued that the availability of treatment for IPF patients is especially crucial.

 

Allergy UK – Annual Review

Allergy UK is pleased to share with everyone its first annual review. The publication represents the whole spectrum of our work over the last 12 months – from scientifically testing products to holding our exciting fundraising events. Find out how you can support our Allergy UK nurses and how we hope to achieve our objectives in 2014.

 

New asthma coach app for iPhone wins healthcare innovation award

• Award-winning iPhone app and mobile website is helping many Irish asthma sufferers to manage their condition. Starting from October, the app is available also outside of Ireland, so everybody with asthma and iPhone can use this app to better manage its disease
• Asthma affects 470,000 people in Ireland – largest chronic disease group in the country
• App features range of services including detailed asthma information and instructional videos, a live pollen feed and a diary section to record asthma attacks

With the fourth highest incidence of asthma in the world, people in Ireland who suffer from this chronic condition need all the help they can get to keep their symptoms under control. A new iPhone app and mobile website is helping many Irish asthma sufferers, and now also anyone in the world, to manage their condition while on the go, and it has just received an award for innovation in healthcare.

To read the whole article with comprehensive information on the topic of the asthma iPhone app by Asthma Society of Ireland, please click here.

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