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Over one third of MEPs support campaign on endometriosis


Deborah Newton-Cook, Lone Hummelshøj, Baroness Ludford MEP, and Diana Wallis MEP campaigning in Strasbourg

BRUSSELS, 13 JUNE 2005: 266 MEPs have supported the European Parliamentary Written Declaration on Endometriosis seeking a significant increase in funds and awareness in the EU for endometriosis.

This is the highest number of signatures achieved for a health issue and the sixth most successful Written Declaration since 1998.

Endometriosis is costing the EU an estimated €30 billion annually in lost days at work due to the impact of the disease.

Members of the European Endometriosis Alliance lobbied MEPs to gain support for the Declaration which calls for:
  • Member States' governments to support awareness-raising activities by national organisations, including information campaigns targeting the public, health professionals, and legislators;
  • Inclusion of prevention of endometriosis in future Community Action Programmes for Public Health;
  • More basic research into the cause, prevention and treatment of endometriosis.

Diana Wallis, Liberal Democrat MEP, co-author of the Declaration and an endometriosis sufferer, said:
“This is a huge success. I am delighted that so many of my colleagues have supported us. I know from personal experience what an impact endometriosis can have. I sincerely hope that the European Commission takes note of the support this Declaration has received and explores ways to provide EU funding for endometriosis”.

Lone Hummelshøj, co-founder of the Danish Endometriosis Society (Endometriose Foreningen) and editor of www.endometriosis.org, said:
“This tremendous display of support from MEPs for our campaign is extremely positive. It is so important we see earlier diagnosis, improved levels of awareness of the symptoms, better information and greater support. Funding for research and European endometriosis organisations now will result in long term financial gain on national economies and significantly improved quality of life for women with endometriosis.”

Robert Music, chief executive of the National Endometriosis Society in the UK, said:
“I seriously hope this will make officials within the EU sit up and see the importance of our campaign and support us. With an estimated 14 million women in the EU suffering with a condition that can have a severe effect on their fertility and quality of life – with many struggling to obtain a correct and prompt diagnosis it is simply unacceptable in 2005 that funding and awareness is so low”.

NOTES TO EDITORS:

• Endometriosis is a painful, chronic condition where tissue similar to the lining of the uterus is found elsewhere in the body, primarily in the abdominal cavity, resulting in lesions, cysts, and adhesions, which lead to inflammation, pain, infertility and other medical problems. The cause of endometriosis is not known and there is no cure, yet it affects an estimated 14 million women and girls in Europe alone and millions more world wide.

• The result of women living with symptoms for protracted lengths of time can lead to incorrect treatment and unnecessary impact on their quality of life. There are also serious implications in the work place for those suffering from the illness, and endometriosis may cost an estimated €30 billion annually in lost days at work; in addition to this are many other costs including the expense of delayed diagnosis, medical and surgical treatments, and IVF.

• Members of the European Parliament may submit a Written Declaration on a matter falling within the sphere of activities of the European Union to raise awareness of an issue. It is open for signature for three months. If more than half of MEPs sign (367 minimum) it is formally sent to the European Commission and the Council of Ministers.

• The Written Declaration (text below) was launched in March 2005 to coincide with Endometriosis Awareness Week 7 – 13 March 2005. By the closure date, 9 June, 266 MEPs (36% of the Parliament) had signed.

• Since 1998, 173 Written Declarations have been tabled by Members in the European Parliament. Only five have attracted more than 266 signatures (concerning the transport of live animals; banning trade in cat and dog fur; deafblind people's rights; piracy and counterfeiting; and the Holocaust Remembrance day). Between 1989 and 1998 six Written Declarations were adopted.

• The National Endometriosis Society was founded in 1981 and Endometriose Foreningen was founded in 1997. They are two of the leading charities in Europe, providing support including support groups, information, and help lines open every day of the year for women with endometriosis and their families. Both charities are members of the European Endometriosis Alliance, which has representatives from 14 countries in Europe, see www.endometriosis.org/eea.html

• Robert Music, chief executive of the National Endometriosis Society in the UK and Lone Hummelshøj, founder of the Danish Endometriosis Society (Endometriose Foreningen) recently met with MEPs and European Commission officials to explain the implications of the condition on the EU, particularly the financial and health impact.


WRITTEN DECLARATION ON ENDOMETRIOSIS


The European Parliament,

- having regard to Rule 116 of its Rules of Procedure,

A. acknowledging that endometriosis is a debilitating disease affecting an estimated 14 million women and girls in the European Union, with significant costs for the individual and state,

B. noting that sick leave alone due to endometriosis costs an estimated €30 billion in the EU annually,

C. concerned about recent international data indicating a diagnostic delay of over 9 years as well as frequent misdiagnosis due to lack of awareness and understanding of symptoms,

D. welcoming Endometriosis Awareness Week (7-13 March 2005) and the launch of the European Endometriosis Alliance to raise much-needed awareness of the condition in Member States, and recognising that significant funding is necessary for these activities,

1. Calls on the governments of Member States and the Commission to promote Endometriosis Awareness Week and to support awareness-raising initiatives by national organisations;

2. Calls for major information campaigns targeting the public, health professionals, and legislators;

3. Calls on the Commission to include prevention of endometriosis in future Community Action Programmes for Public Health in order to allow more research into the causes, prevention and treatment of endometriosis;

4. Instructs its President to forward this declaration, together with the names of the signatories, to the Council and the Commission.
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