EFA Director Susanna Palkonen was a featured speaker at the Politico Spotlight event, “Chronically underserved – bridging the gap in chronic care”. She brought the perspective of atopic eczema patients in Europe, who currently carry an unbearable burden resulting from a very hard chronic disease, with limited healthcare support and societal stigma.
The event brought speakers from across the EU health policy arena to discuss the rise in chronic disease and how EU policymakers can address this issue to create better care for patients. In discussion, with speakers MEP Sirpa Pietikäinen (EPP, Finland), Secretary General of EUCOPE Alexander Natz, and Associate Director of the European Policy Centre Elizabeth Kuiper, Susanna highlighted the clear demands of the patient community for better healthcare, with focus on atopic eczema patients.
Susanna began her opening statement by painting a picture of the everyday struggles of atopic eczema patients. She pointed out that there are patients living with atopic eczema in regular care who are not offered solutions to manage flare ups, causing the disease to take up a large portion of their time. Susanna also highlighted atopic eczema as a good example of a chronic disease which requires multidisciplinary care, requiring not solely primary care doctors and dermatologists, but other healthcare providers such as nutritionists and psychologists. She concluded with the message that patients want most of all to be understood.
When questioned on the importance of prevention in chronic disease healthcare, Susanna described the current perception of prevention to be too narrow. Instead, what patients need is for prevention and care to go together in healthcare, as that is what patients atopic eczema do every single day. She also emphasised the need for patient reported outcomes in developing healthcare tools.
MEP Sirpa Pietikäinen, who is also chair of the European Parliament Interest Group on Allergy and Asthma, spoke about the importance of policymakers understanding the needs of patients, commenting that health and social issues are a clear priority for EU citizens. She also supported the need for a greater patient-centric approach to healthcare, while calculating what is good for patients while being cost effective.
In the following discussion, GlobalSkin CEO Jennifer Austin brought to the forefront the gaps in understanding atopic eczema as a chronic disease, and the resulting burdens on patients, caregivers, health systems & society. She highlighted the economic burden of atopic eczema for patients in Europe, which is estimated to cost Europe 30 billion euros each year.
The gaps in care for atopic eczema, and proposals for policymakers to address this issue, are brought to light in EFA’s consensus report ‘The Burden of Atopic Eczema’ available online.