Healthy Skepticism Library item: 8662

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Publication type: media release

Leading Clinician Calls for New Approach to Atopic Eczema Treatment at International Gathering of Patients’ Groups
World Allergy Organization 2004 Aug
http://web.archive.org/web/20070626193215/http://www.worldallergy.org/media/press_releases/atopic_eczema.html

Notes:

Novartis is a major sponsor of the World Allergy Organization

Full text:

Doctors are consistently failing to provide the treatment needed by patients and their families to help them cope with the effects of atopic eczema, according to a world-renowned expert. Professor Ulrich Wahn told an international gathering of patient groups, attended by World Allergy Organization: “Anybody who’s honest with themselves must admit: We’re doing a terrible job.”

Prof. Wahn’s comments came during a meeting for patient associations from eight countries, held at the Novartis Institute for Biomedical Research in Vienna, Austria – a global centre of excellence for research into dermatology. Prof. Wahn, who is professor of paediatric allergology at the Charité Berlin Virchow-Klinikum, Germany, said that doctors often ignored their patients’ pressing need for advice on managing the condition, and sent them away with a prescription for topical corticosteroids. “I can hardly imagine any disease where we fail as badly as atopic dermatitis,” he said.

The keynote speech by Prof. Wahn was one of the highlights of a unique gathering organised by Novartis that brought together patient advocates from Austria, Finland, Germany, the Netherlands, Norway, Poland, Spain and the UK, representing 11 national and international groups including the World Allergy Organization and EFA, the European Federation of Allergy and Airways Diseases Patients’ Association. The meeting provided a forum for discussing a range of issues affecting atopic eczema patients, including new approaches to therapy, reimbursement of medications, and the benefits of working together on a pan-European level to gain greater influence with health authorities, politicians and the medical community. The essential role of the allergist in the management of patients with multiple allergic symptoms, and the need to monitor the cumulative dose of topical therapies in these patients, was emphasized by World Allergy Organization.

Prof. Wahn went on to describe an alternative approach to treatment that is being explored in Germany through a pioneering programme of ‘patient schools’, designed to educate patients and their families on effective therapy with support from a multi-functional team of paediatricians, allergologists, dermatologists, psychologists, dietitians and nurses. He said: “We’re convinced that we are able to fill a gap and provide the healthcare that atopic dermatitis patients and their families need, instead of just giving them a prescription.”

The patient groups were welcomed to Vienna by research unit head Prof. Dr. Anton Stuetz, who described the discovery and development of Elidel cream (pimecrolimus) – one of a new class of therapies called calcineurin inhibitors which act in a completely different way from steroids, by selectively blocking the release of inflammatory chemicals that cause the redness and itching associated with atopic eczema. Prof. Wahn agreed that the calcineurin inhibitors offered significant potential. “Paediatricians aren’t looking for more efficacy, we’re looking for more safety, particularly with infants. Having another option besides topical corticosteroids makes communication with mothers much easier, because we can discuss long-term treatment.”

Another major initiative outlined at the meeting was the Human Impact Study, a survey of 2,000 atopic eczema patients and their families in eight countries, funded by Novartis, which aims to investigate the emotional impact of the disease in areas such as family life, relationships, careers and education. Fieldwork is currently under way and the results will be presented in November. Margaret Cox, the Chief Executive of the National Eczema Society in the UK told the meeting: “My feeling is that this survey will be very important to our organisation. It will inform us whether we are providing support in the right way and to the right people, and it will help us in our lobbying activities with politicians and health authorities.”

Keith Allan, head of Global Product Advocacy for Novartis, said: “We seek to ensure that the patient is at the centre of all our activities, and meetings such as this are of tremendous value in ensuring we are fully aligned with the groups that do so much excellent work in representing the interests of patients. By sharing information in this way, we are all better equipped to tackle the effects of this chronic and distressing disease, and we look forward to meeting again in future to share progress and plan initiatives that will help us to achieve our common goal, of helping patients and those who care for them.”

List of groups participating in visit:

Asociación de Familiares y Pacientes de Dermatitis Atópica (ADEA) – Spain
Deutscher Neurodermitis Bund e.V. (DNB) – Germany
Deutscher Allergie- und Asthmabund e.V. (DAAB) – Germany
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)
Iholiitto ry – Finland
National Eczema Society – UK
Norsk Psoriasisforbund – Norway
Stichting VoedselAllergie – Netherlands
Stowarzyszenie Pomocy Chorym na Astme i Choroby Alergiczne – Poland
Vereniging voor Mensen met Constitutioneel Eczeem (VMCE) – Netherlands
World Allergy Organization