European Parliament brings endometriosis stake holders together

28 MARCH 2007

Legislators, physicians, and women with endometriosis from across Europe came together at a lunch seminar in the European Parliament today to raise awareness of the disease.

: Professor Thomas D’Hooghe, Professor Elisabetta Coccia, Lone Hummelshoj, Diana Wallis MEP, Professor Giorgio Vittori, and Jacqueline Veit in the European Parliament

Diana Wallis MEP, Vice-President of the European Parliament, who hosted the event said:

I am very pleased that today’s event was so well attended not only by parliamentarians but also by representatives of the European support organisations. Endometriosis affects at least 16 million women and girls in the EU.

Their suffering is not visible but the disease can leave lifelong scars.

Diagnostic delay and hit-and-miss treatments

A diagnostic delay of more than eight years from when the woman first seeks medical help and until she is diagnosed contributes to a series of “hit and miss” treatments with a subsequent substantial socio-economic cost. In addition to being costly, medical treatments for endometriosis have side effects and whilst they may be able to temper disease symptoms for a shorter or longer period none of them provide a cure.

Surgery may play an important role in removing endometriotic disease. However, this should always be carried out by experienced endoscopic surgeons, with appropriate control mechanisms in place. This has been recognised officially only in Denmark where national guidelines have been in place since 2002 for women with endometriosis to be referred to one of two national centres, where the necessary surgical experience is available.

Italian Senate acknowledges challenge of endometriosis

These challenges have been formally acknowledged by the Italian Senate, the first EU memberstate to recognise endometriosis as a social disease, which is embarking on a five year plan to address the following aspects in relation to endometriosis:

Treatment by specialists within multi-disciplinary networks of excellence;
Information campaigns to reduce time to diagnosis;
Reimbursement;
National registries to monitor epidemiology and efficacy of treatments;
Support;
Disability allowance;
Investment in research.

Moving forward

Said Senator Laura Bianconi:

By taking care of women, we are safeguarding our future.

Professor Thomas D’Hooghe, Chair of the Special Interest Group on Endometriosis in ESHRE, welcomes this initiative, and emphasised that:

Even within a specialist centre we do not have treatments which cure endometriosis. If we as clinicians and scientists are truly to help women get optimal treatment, significant investment is needed into causal research, so that we can work towards prevention of endometriosis for the next generation of women.

Developing treatments that actually work will preserve these women’s fertility, improve quality of life, and reduce socio-economic costs.

Written Declaration

: Stakeholders come together in the European Parliament on 28 March 2007

In 2005 a Written Declaration on Endometriosis, organised by Diana Wallis MEP in the European Parliament, attracted more signatures than on any other human health issue.

Yet little action has been carried out by member states in awareness, information campaigns and causal research, which the Declaration called for.

Lone Hummelshoj, Secretary General of the World Endometriosis Society, said:

Despite the success of the 2005 Written Declaration, endometriosis is still being left behind. At a time where gender equality appears to be a priority, women’s health and endometriosis in particular is being neglected despite its prevalence and impact on society.

It is time we start seeing investment into female specific benign, chronic diseases on the same scale as for male specific benign and chronic disease.

Global endometriosis research united!

Ms Hummelshoj went on to announce the formation of the World Endometriosis Research Foundation, which is the first global charitable organisation to address causal research and treatment efficacy in endometriosis. It is a joint collaboration between the European Society for Human Reproduction (ESHRE), the American Society for Reproductive Medicine (ASRM), and the World Endometriosis Society (WES) with a mission to:

facilitate and carry out large scale international multi-centre trials
support specific research projects investigating disease mechanisms.

With sufficient funding, its global reach may herald a new era of meaningful medical research in endometriosis. Success in this area would mean that the next generation of women may not have to struggle with endometriosis.

For more information see: www.endometriosisfoundation.org