Italian spotlight on endometriosis as a social disease

by Jacqueline Veit, August 2005

Professor Giorgio Vittori (Rome, Italy), Jacqueline Veit (president of Associazione Italiana Endometriosi, and EEA co-founder) and Lone Hummelshoj (EEA co-founder and facilitator) proved to be a winning trio at the Italian-led “Endometriosis: a social disease” conference, which took place in Rome on 22 – 25 June 2005.

Lone Hummelshøj, Professor Giorgio Vittori, and Jacqueline Veit make history at the Italian Endometriosis Congress, 22 – 25 June 2005

This was certainly not just one of the many conferences we are used to taking part in.

Something different occurred: for the first time gynaecologists, surgeons, psychologists, epidemiologists, legislators, journalists and women with endometriosis all got together to focus on the disease as a social issue, not only as a medical one.

Furthermore, the issue of endometriosis as a social disease was highlighted not just at the congress, but in conjunction with a series of parallel TV and radio interviews, in which Professor Vittori and Jacqueline Veit explained the issues and challenges surrounding the disease to the general public.

Addressing all aspects of endometriosis

Highly respected practitioners took part in the Congress enabling endometriosis to be addressed from different perspectives (immunology, endocrinology, genetics, nanotechnologies etc), as well live surgery sessions.

In addition to describing some of the many activities of the Associazione Italiana Endometriosi (AIE), Jacqueline Veit was give the honour to address the audience as a key note speaker at the Opening Ceremony to explain the patient’s point of view, underlining the psychological and emotional pressure women with endometriosis are confronted with, and she reminded practitioners to:

• carefully listen to their patients;
• provide accurate information on the disease so that women can make informed decisions and have realistic expectations;
• adopt a multi-disciplinary approach to a disease which does not only have a gynecological impact;
• support the requests for economic support to help women and their families cover health expenses;
• support the request for legislative commitment to promote research.

Addressing legislators

On the last day of the conference, a broad panel was assembled, consisting of representatives from the Ministry of Health and Ministry of Equal Rights, the Health Commission of both Houses, an MP and an MEP who signed the Written Declaration on Endometriosis, Lazio Region, the Province of Roma, the City of Roma, the Society for Patients’ Rights, the Associazione Italiana Endometriosi, the European Endometriosis Alliance, journalists, and representatives of gynaecologists and GP associations.

On this occasion, Lone Hummelshoj acted as spokesperson for the European Endometriosis Alliance and reminded the audience that countries such as Denmark has already recognised endometriosis as a disease that requires specialist care, and where National Institute of Health guidelines have been in place since 2002, which gives women the right to seek treatment at one of two national, specialist centres for endometriosis.

What’s more, she had the opportunity to announce the good news that 266 members of the European Parliament has signed the Written Declaration on Endometriosis, which is not only the highest number of signatures ever collected for a health issue, but is also a stunning example of what is achievable when physicians and women with endometriosis work together. The first significant result of the joint activities of the European Endometriosis Alliance!

Professor Vittori concluded the morning’s panel session, which was hosted by Italian TV presenter, M Mirabella, to formally request that endometriosis is included among the social diseases was made during an emblematic ceremony which highlighted the significance of the issue.

After a delicious buffet lunch, shared by both patients and physicians, the afternoon was dedicated to women with endometriosis. In co-operation with the Associazione Italiana Endometriosi, 10 expert gynecologists offered their time for free consultations.

The patient in focus

The patient was truly the focus of this conference, which represents yet another important step towards raising awareness in Italy. And, very timely, on 28 June 2005, the Italian Senate voted in favour of the first act of the bill that will recognise endometriosis as a social disease!

It must be said that the Associazione Italiana Endometriosi have certainly achieved a great deal in only six years! Founded in 1999, the Association has filled an enormous gap, as before that there was absolutely no support or information available for Italian women with endometriosis.

Taking endometriosis to the Italian parliament, and the many other results achieved so far in Italy have no doubt taken a great deal of work and time to accomplish. A lot of credit must be given to the Italian Association’s very determined and persistent front woman, Jacqueline Veit, who has been the driving force behind all of this. Jacqueline, co-founder and president of the AIE, has been working with women with endometriosis for 8 years now, and her and her team should be congratulated, not just for the results they are getting, but also for the professional way in which they work to improve the lives of women with endometriosis.