Conclusion of investigation by the Italian Senate into endometriosis as a social disease

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.

Senator Laura Bianconi

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”.

Associazione Italiana Endometriosi

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.