All posts by Isabel Proano

Isabel Proano

About Isabel Proano

EFA Communications Manager, Isabel has extensive experience in advocacy and campaigning at European and international level. Prior to joining EFA in April 2014, she worked with the United Nations and Save the Children in humanitarian advocacy and mobilization for public health.

Join the call to action on allergy and asthma!

Patients, doctors and Members of the European Parliament Interest Group on Allergy and Asthma have launched a call to action to improve the quality of life of allergy and asthma patients. See more details on this campaign co-led by EFA, our member, on EPF’s Blog!

Targeted at European and national decision-makers, this campaign has been initiated by the European Academy of Allergy and Clinical Immunology (EAACI) and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), member of EPF.

Its overarching objective is to unite all strategic European and national stakeholders as well as interested individuals to help drive change in the policy responses to allergy and asthma, and to support patients’ rights.

In particular, it calls for:

  • European strategies and programmes on allergy and asthma to be implemented in all Member States;
  • Greater funding for research to advance the understanding of allergy and asthma;
  • Better prevention and diagnosis to achieve early detection and allow timely and effective treatment;
  • Actions to address underlying triggers, such as air quality, food allergens and chemicals, and to improve the analysis of the root causes of allergic diseases;

Strengthened work to pioneer individualised treatment and progress personalised medicine.The Call to Action is open until the end of September for endorsement by all interested parties wishing to join this move to support stronger and improved allergy and asthma policies.

Do you want to join in creating a healthier and happier future for the over 220 million patients suffering from allergy and asthma in Europe?

Please sign and share the online petition! http://callallergyasthma.eu/  #CallAllergyAsthma

Contact: Isabel Proaño Gómez, Communications and Membership Manager

Not Everyone Is Welcome Aboard: Oxygen-Dependent Patients Are Facing Discrimination When Taking a Plane

More than 3.5 million people need medical oxygen in Europe and many are advised to travel to regions with temperate climates that will ease the symptoms of their disease. However the free movement of people around the EU Member States might turn into a nightmare for severe respiratory patients. The European Federation of Allergies and Airways Diseases Patients Associations (EFA) has documented that air travelling with oxygen is in many cases unaffordable and too complicated for individual patients to even consider.

It all started with a quite striking experience from one of our patients. Invited to an EFA workshop, a chronic obstructive pulmonary disease (COPD) patient under oxygen therapy reported to us the difficulties she faced to get in to Brussels. Her testimonies of a steward asking her to turn off her oxygen concentrator during take-off and landing and to book a separate in-bound ticket for the machine led us to wonder if other patients were facing the same ignorance and abuse when moving around Europe on a plane. We realised soon it was the case so we started a project to enable air travel with oxygen therapy.

We analysed the current air travel legislation. The European Commission DG Move told us the legislative framework for disabled persons and persons with reduced mobility to travel by air allowed oxygen-dependent patients to fly as any other passenger. But the reality was very different. We collected patient testimonials explaining the complex and not standardised procedure to request oxygen on-board, including overcharging for oxygen bottles on-board, all of this resulting in the fear of an oxygen gap between their home and the plane.

Our new website flywithoxygen.efanet.org is the result of a long-term fieldwork collecting the policies, procedures and prices of all European airlines. Through this platform, we are offering guidance to patients on steps to get their oxygen treatment on-board, but we also want to shed light on the abusive and discriminatory policies some airlines are practicing on patients’ needs. It is simply unacceptable.

Our continued work has already contributed to improve things though. As a result of our meetings, four European airlines have decided to offer oxygen bottles for free in their flights. The discussions we had with Airports Council International and the European Civil Aviation Conference to enhance communication between airports, airlines and staff to enable smooth travel for oxygen-dependent passengers were very positive. We now hope that our website will be a helpful tool for patients and a proof that our health in all policies approach can make a difference to every aspect of a patient’s life.

Our members in the spotlight: EFA

Our membership is our compass. We are delighted to feature one of our 64 member organisation every month on our blog. This time, we interviewed Isabel Proano of the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), who provides an overview of her organisation in five short answers.

What’s on the top of your agenda?

One of our key activities for this year is to ensure the functioning and impact of the new European Parliament Interest Group on Allergy and Asthma. We share the Secretariat of the group with the European Academy of Allergy and Clinical Immunology (EAACI) and together we are working to gather more MEPs support and to bring meaningful actions for patients. We are also advocating for an EU Strategy on chronic diseases and we have just published a report to harmonise care for chronic obstructive pulmonary disease (COPD) patients in Europe.

Why does your organisation exist?

30% of the European population is affected by allergy, asthma and COPD. Our role is to ensure that the voice of those patients is represented at EU level. Everything we do is with and for patients to have the right and access to best quality care, to participate in their care, have a safe environment and to live uncompromised lives.

What is your biggest achievement as an organisation?

We are becoming more and more successful in bringing the “health in all policies” principle forward, which is key for allergy and respiratory diseases. For us, good quality care must me coupled with a healthy environment. We are working on topics that are not just related to health, but to many other aspects of EU policy development which affect the lives of the patients we represent.

What is for you the key benefit of your organisation’s involvement in EPF?

No matter the disease we cover, we all represent patients. At EFA we are conscious that we need a strong and united patient voice to increase awareness, quality care, patient participation and specific disease research at European level. Besides, there are many cross-cutting issues affecting patients that require lots of expertise from different sectors and such a work can only be done through an umbrella structure like EPF.

What’s the main misconception about your disease area?

Unfortunately, asthma and allergies are still considered second class chronic diseases and the result is catastrophic. Patients are too often stigmatised because of their food allergies, coughing or their wheezing or even penalised because authorities consider their disease is self-inflicted, like in the case of ex-smokers that live with COPD.

More information: www.efanet.org