Professor
Thomas D'Hooghe, Professor Elisabetta Coccia,
Lone Hummelshoj, Diana Wallis MEP, Professor
Giorgio Vittori, and Jacqueline Veit in the
European Parliament
|
|
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.
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 14 million women and girls
in the EU.
"Their
suffering is not visible
but the disease can leave lifelong scars".
|
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.
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.
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".
|
Stakeholders
come together in the European Parliament on 28
March 2007 |
|
In 2005 a Written
Declaration on Endometriosis, organised by Diana
Wallis 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.”
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:
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
You
too can make a difference
|
.gif)
