On June 22 2013 the Global Allergy and Asthma Patient Platform (GAAPP), of which EFA is a member, Board elections took place during the EAACI-WAO Congress in Milan. Robert Oliphant, a patient representative from Canada, was elected the new GAAPP president. As a patient, Oliphant will bring a new perspective to the platform initiated by EFA in 2009, since the former president Natalio Salmún was a physician.
EFA Board member Per-Åke Wecksell was elected the first Vice President (you can see the full list of GAAPP Board members below).
The new GAAPP Board:
Apart from the Board elections, GAAPP’s General Meeting also took place in Milan. The meeting was chaired by Per-Åke Wecksell, as the former GAAPP President Natalio Salmún could not attend the event due to health issues. As Salmún is a passionate campaigner for patients’ rights in South America, the assembly decided to honour him as an honorary president. This role is not included in GAAPP’s constitution yet, but the board will change it accordingly in order to introduce the position in future.
GAAPP is a global platform that has more than 20 members from countries all around the world, it brings together national, European and also international organisations dealing with asthma and allergies. The main aim of GAAPP is to guarantee that rights of patients with asthma and allergies are recognised by governments, health care professionals and the public. GAAPP wants to achieve this goal through patients’ empowerment and support to more active role of patients in their care. The platform also focuses on helping to set up patients’ organisations in developing countries and support them in campaigning for the rights of patients with asthma and allergies.
EFA’s Project and Fundraising Officer Antje Fink-Wagner took part in WHO’s Global Alliance against Chronic Respiratory Diseases (GARD) meeting in Astana, Kazakhstan. She presented EFA’s Allergy Awareness Project which aims at improving the care and expertise in allergy by raising awareness of allergies as chronic diseases, promoting Allergology education in Europe and increasing the ability to identify early symptoms.
A special emphasis was put on presenting the Pilot Pharmacies Project carried out in Austria. “Participants were especially impressed to see the involvement of pharmacists in the Allergology care and prevention and immediately decided to work on involving them in their respective countries,” Fink-Wagner said.
At the meeting, Nikolai Khaltev was also elected the new chairman, Alvaro Cruz became a member of the Executive committee and professor Arzu Yorgancioglu the new vice-chair.
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On July 9th EFA’s Susanna Palkonen and David Brennan attended the European Patients’ Forum (EPF) seminar for its EMPATHY – “Europe meets young patients” project in Brussels. The EFA representatives attended session designed for exploring challenges young people face with relation to healthcare services and discuss what can be done to address them. The session began with a role play in which young patients recreated a scenario in which an adolescent is diagnosed with diabetes and meets with their general practitioner in the company of their parents. The perspective of the adolescent in the role play attempted to replicate a common practice for many general practitioners, who may turn to the parents for answers to his questions. It was a role play demonstrative of the unintentional exclusion of young people from having a voice in their own healthcare because their opinion is either silenced by over-protectiveness or parents in denial.
The role play was an excellent prelude to the later discussions in breakout sessions. Discussions brought up concerns such as the transition of young patients with chronic diseases from paediatric care to adult care, which often symbolises a transition from a personalised, familiar and comfortable environment to a new facility full a strangers. While some centres ideally have both paediatrics and adult care together, many young patients expressed concern with this often overlooked transition period which often coincides with challenging years of studies and changing social behaviour of peers. Additional concern was expressed for the exclusion of patient or human interaction as a part of medical studies for professionals and young patients present agreed the patient could fulfil a role in this regard as experts in educating healthcare providers on how to interact with patients. The young patients also endorsed separate consultations with professionals and their parents as discussions often revolve around different points of interest.
On July 11th David Brennan sat in on a panel discussion, which was a simulated press conference, in which the young patients were able to ask questions to representatives from different organisations and experts in healthcare. EFA’s representative answered to questions such as “What are you doing to involve young people?” Comments from EFA were concentrated around how in the future the organisation wishes to evaluate the prevalence and treatment of asthma in youths for a project and how sharing best practices, such as the Finnish Allergy Programme, are vital for improving healthcare in Europe. Many other questions asked panellists how youths can influence the availability of treatments and how the financial crisis in Europe is negatively affecting young people’s healthcare.
More information here.
Helle Grøttum and Betina Hjorth from EFA’s member organisations in Norway and Denmark attended the Patient Organisations Workshop devoted to food allergies. The event, co-chaired by EFA president Breda Flood, took place during the EAACI-WAO Congress in Milan and offered a unique opportunity for patient organisation representatives, health care professionals and patients themselves to learn more about recent developments in the field of food allergy and food labelling.
Divided into three sessions, the workshop addressed costs of food allergies, allergen thresholds and patients’ attitudes to buying food. Special attention was lent to allergic children, as food allergies are prevalent mainly among kids. Raising a child with food allergy affects both the quality of life and family’s budget. Families with allergic children tend to eat simpler food, don’t eat out often and travel less – because they are afraid of triggering an allergic reaction. They also have to spend more on their groceries as prices of allergy safe products and substitutes are higher.
The first session depicted allergies as a public health issue and focused on costs related to living with the disease and managing it effectively. Having an allergy has proved to be very expensive not only for the person suffering from the disease but also for public social and health care systems. In addition, costs of allergy tend to rise with its severity.
Health-related quality of life is lower, allergic people are afraid of severe reactions and the fear restrains them from living uncompromised lives. Even ordinary grocery shopping might turn into a nightmare as supermarkets do not support special allergy free aisles because they want customers to spend as much time in the store as possible. Unclear diagnosis, confusing pictograms, catering – all these factors pose serious challenges in everyday’s lives of allergic people. As a conclusion, better diagnosis, improved communication and clearer rules on labelling are needed.
Discrepancies between laws in different EU Member states don’t make it easier for allergic people to travel. The EU recognizes the problem, and expects to address it with a new list of allergens. However, the main questions still remain the same: 1. How much risk are patients willing to take? How can we make them feel safe?
Health care professionals believe that if there was enough information that the products and thresholds set are safe then patients would accept these limits. Finding the limit and the right testing method, especially if the results are aimed at being legally binding, is the real challenge, as many things can affect how people react to allergens, starting from the dose, exercise, asthma etc.
In the last session, the food industry representatives were given the floor to talk about costs related to food allergies and patients’ attitudes to thresholds. As Rene Crevel from Unilever pointed out, the food labelling is not the last step, but rather it is the management of production in the factory.
Findings of the consumers’ attitudes survey were also presented at the workshop. More than 10,000 people mainly from Canada and USA took part in the survey. The question of allergen thresholds proved to be one of the sticking points for many respondents. People with allergies, carers and parents of allergic children are extremely anxious when it comes to buying food which may contain allergens. Even if the amount of allergens in products is below the threshold that is believed to be safe, allergic people are used to stay away from “may contain” or “traces of” label.
Participants of the workshop came to a conclusion that more information is needed to assure allergic people of thresholds’ safety, encourage them to take responsibility for their own action plan and teach them to manage their adrenaline injectors with confidence.
More information here.