Recognising endometriosis as a social disease

13 NOVEMBER 2007

Fertility and Sterility this month publishes a paper describing how action, started at grass root level, calling for increased awareness and investment in research, has resulted in unprecedented recognition of endometriosis by the European Parliament.

This initiative has subsequently been taken up by the Italian Senate in a five-year action plan.

The authors have documented a process, which is based on community action, where all stake holders have recognised that to truly address a disease as prevalent as endometriosis, a strategic alliance between patients, physicians, scientists, and legislators is essential – and has now been created in Europe.

These stakeholders, patients, physicians, scientists, and legislators have come together to describe a three step process, which has resulted in unprecedented recognition of endometriosis in the European Parliament, and how one country – Italy – has responded to the EU’s call for action and moved forward at a national level with a five year action plan and formal recognition of endometriosis as a ‘social disease’.

Co-authors Jacqueline Veit and Lone Hummelshoj, who represent the European Endometriosis Alliance, say:

The new strategic alliances, which have been formed as a result of the EU and Italian initiatives, are an important step forward in addressing all aspects of the disease and to recognise endometriosis as a disease which needs to be dealt with by society as a whole.

A call for action

The authors have called for all national governments to:

• Fund causal and preventive research;
• Recognise that a chronic, multi-factorial disease such as endometriosis needs to be treated in centres of excellence by a multi-disciplinary team, and work towards the establishment of such centres based on peer-reviewed treatment guidelines;
• Fund national and international awareness campaigns to reduce time to diagnosis, reduce” hit and miss” treatments, and ensure timely multi-disciplinary expert care;
• Establish national and international registries to monitor morbidity and effectiveness of treatment with a subsequent aim to preserve fertility, improve quality of life, and reduce personal and socio-economic burden.

Source

Bianconi L, Hummelshoj L, Coccia ME, Vigano P, Vittori G, Veit J, Music R, Tomassini A, D’Hooghe T. Recognizing endometriosis as a social disease: the European Union-encouraged Italian Senate approach. Fertil Steril 2007;88(5):1285-7.