Recognising
endometriosis as a social disease
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 Europe 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".
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.
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