ROME, JANUARY
2006: The investigation into endometriosis as a social
disease by the Italian Senate concluded on 30 November
2005. The investigation was an important step forward
towards the official recognition of endometriosis, the
need for improved therapeutic options, as well as economic
aid to women with endometriosis.
The, final paragraph of the concluding document,
presented in the Italian Senate by Senator Laura Bianconi,
on behalf of the Senate’s Health Committee,
stressed:
“It is necessary to acknowledge endometriosis
as a social disease, with the woman as the focal point,
and at the same time to recognise, value and use each
specific competence within this field in the fight
against the disease. In order to obtain concrete benefits
for women with endometriosis the Investigating Committee
proposes the following:
1. Identification of specific criteria, such as:
reimbursement to hospitals (dedicated, evaluated and
with national price rates), specific note for drugs
(ie. note 51), and explicit prescriptions;
2. It will be beneficial to initiate cooperation between
the Ministry of Work and the Ministry of Social Policy
in order to address the effect the disease can have
on work, absence from the workplace, and disability
issues;
3. Identification of diagnostic and therapeutic pathways
based on evidence based medicine, and patient follow-up;
training of medical professionals in this specific
field, and promotion of the implementation of both
national referral centres for diagnosis and follow-up
care and centres of excellence for treatment, as well
as centres of excellence for the training of those
who carry out pelvic surgery;
4. Allocation of funds for research into the prevention
of endometriosis in future public health information
campaigns. In this way research into the cause, prevention
and cure of endometriosis can be improved;
5. Implementation of specific regional registries,
as well as a national registry;
6. Availability of free pharmacological treatments
if needed, in particular for those in need of ongoing
medical therapy, including: oral contraceptives, GnRH-analogous
and other related drugs for the treatment of symptoms;
7. For women with severe or persistent disease a “support
package” should be designed to include: free
check-ups, free drugs, protection of the woman and
her fertility, disability benefits (according to law
n. 104 of 1989) for women with severe psycho/physical
problems who have undergone multiple surgeries with
severe recurrence and with resistant chronic pelvic
pain;
8. Implementation of information campaigns on health
education in schools and to the general population;
9. Official recognition of a national endometriosis
day”.
Click
here for the complete Italian statement.
The Associazione Italiana Endometriosi (AIE) can
be very proud of its vital contribution to this investigation,
which will benefit all women with endometriosis and
their families regardless of whether they are members
of the Association or not.
In October 2005, AIE president, Jacqueline Veit presented
to the Italian Senate on “Endometriosis: impact,
costs and quality of life”, where she highlighted
that endometriosis affects all of us and should no
longer be treated as an insignificant issue. She called
for work to be done to provide:
• Recognition of endometriosis as a significant
healthcare concern and chronic disease;
• Government support of awareness-raising activities,
including information campaigns targeting the public,
health professionals, and legislators;
• Inclusion of prevention of endometriosis in
school sexual health programmes;
• Centres of excellence that would work in synergy
with local centres, and which would train surgeons;
• More basic research into the cause, prevention
and treatment of endometriosis.
She also called on the legislators to:
• Formally recognise the second week in March
as Endometriosis Awareness Week;
• Support requests for economic support to help
women and their families to cover health expenses.
Obviously, the Italian Senate listened, and
has now called for implementation of the AIE’s
suggestions, as per Senator Bianconi’s statement!
This is a huge step in the right direction to get
endometriosis recognised as the serious disease it
is. Let us hope that many other countries decide to
follow the good example, which Italy appears to set.
