Bianconi, L.

Coccia, Maria Elisabetta

D&apos

Hummelshoj, L.

Music, R.

Tomassini, A.

Veit, J.

Vigano, P.

Vittori, G.

English

Florence Research

EDITOR’S CORNERRecognizing endometriosis as a social disease: theEuropean Union-encouraged Italian Senate approachLaura Bianconi,a Lone Hummelshoj,b,d Maria Elisabetta Coccia, M.D.,a,c Paola Vigano, Ph.D.,dGiorgio Vittori, M.D.,e Jacqueline Veit,b,f Robert Music,b Antonio Tomassini,a andThomas D’Hooghe, M.D., Ph.D.da XII Committee on Hygiene and Health in the XIV Parliament of the Italian Senate, Rome, Italy; b European EndometriosisAlliance, London, United Kingdom; c Department of Obstetrics and Gynaecology, University of Florence, Florence; d ESHRESpecial Interest Group on Endometriosis & Endometrium, Grimbergen, Belgium; e Department of Obstetrics andGynaecology, Hospital San Carlo–IDI Institute, Rome; and f Associazione Italiana Endometriosi Onlus, Milan, ItalyStarted at the grassroot level, increased awareness and investment in research has resulted in unprecedented rec-ognition of endometriosis by the European Parliament, taken up by the Italian Senate in a 5-year action plan. Thisoffers welcome assurance to the scientific community. (Fertil Steril 2007;85:1285–7. 2007 by American Soci-ety for Reproductive Medicine.)THE CHALLENGE OF ENDOMETRIOSISEndometriosis is defined as the presence of endometrial-liketissue outside the uterus, which induces a chronic inflamma-tory reaction. The condition is predominantly found in womenof reproductive age, in all ethnic and social groups (1). It is as-sociated with pelvic pain and infertility, which can impact onthe physical, mental, and social well being of a woman and canhave a profound effect on her life, including the ability to fin-ish an education, maintain a career, or to bear children (1).The endometriosis-associated costs to society, includingdelayed diagnosis and ‘‘hit-and-miss’’ treatments (2–4), areconsiderable but yet poorly identified, as are the costs to theindividual when disease symptoms interfere with day-to-daylife at work or at home. Based on a review of cost estimates,the annual costs of endometriosis attained $22 billion in2002 in the United States. These costs are considerably higherthan those related to Crohn’s disease or to migraine (4).In three steps we aim to describe how community action inEurope has addressed the need for more awareness and recog-nition of this social and economic effect of endometriosis.STEP ONE: GETTING THE EUROPEAN PARLIAMENTINVOLVEDIn 2004, members of the most active national endometriosissupport organizations in Europe approached the EuropeanReceived May 1, 2007; revised July 11, 2007; accepted July 13, 2007.Dr. D’Hooghe holds a research chair sponsored by Merck Serono, hasparticipated in a clinical study for Pfizer, and is a consultant for Ferring;Ms. Hummelshoj is a consultant to Bayer Schering Pharma.Reprint requests: Thomas D’Hooghe, M.D., Ph.D., Leuven University Fer-tility Center, Department of Obstetrics and Gynaecology, UZ Gasthuis-berg, B-3000 Leuven, Belgium (FAX: 32-16-344368; E-mail: thomas.dhooghe@uz.kuleuven.ac.be).0015-0282/07/$32.00doi:10.1016/j.fertnstert.2007.07.1324 Copyright ª2007 AmericanParliament to highlight the challenges associated with endo-metriosis. This prompted a group of Members of the Euro-pean Parliament to publish a Written Declaration onEndometriosis (5) in March 2005 calling for:1. Member States’ governments and the European Com-mission to promote Endometriosis Awareness Weekand to support awareness-raising initiatives by nationalorganizations;2. Major information campaigns targeting the public,health professionals, and legislators;3. The European Commission to include prevention of en-dometriosis in future Community Action Programs forPublic Health to allow more research into the causes,prevention, and treatment of endometriosis.STEP TWO: BUILDING A STRATEGIC ALLIANCEAll national endometriosis support groups in Europe, joinedtogether as the European Endometriosis Alliance in October2004, subsequently got involved in the campaign, and high-lighted the challenges associated with endometriosis to theirlocal Members of the European Parliament and urged them tosign The Written Declaration. This effort was supported byendometriosis specialists across Europe, who lent their sup-port by writing to parliamentarians emphasizing the impor-tance of The Written Declaration.This new strategic alliance between patients and physi-cians to reach out to politicians with respect to an importantwomen’s health issue has been unprecedented in Europe—and it worked. By the deadline of June 9, 2005, 36% ofMembers of the European Parliament had signed the WrittenDeclaration.Fertility and Sterility Vol. 85, No. 5, November 2007 1285Society for Reproductive Medicine, Published by Elsevier Inc.This is the highest number of signatures achieved for ahuman health issue and the sixth most successful WrittenDeclaration since 1998.Subsequently this enabled the European Endometriosis Al-liance to meet with officials in the European Commission,and in January 2006, the European Union Community PublicHealth Programme included a specific reference to the needfor ‘‘information and definition of indicators to improve rel-evant information for specific aspects of women’s gynaeco-logical and menopausal health (e.g., endometriosis).’’For the first time ‘‘women’s health’’ was on the EuropeanCommission’s agenda—and with endometriosis as a specificexample.STEP THREE: MAKING IT HAPPEN—ITALY LEADS THEWAYThe InvestigationBased on the initiative taken by the European Parliament, andencouraged by Italian gynecological societies, the Associa-zione Italiana Endometriosi Onlus and the European Endo-metriosis Alliance, a group of Italian senators submitteda motion to the Italian Senate informing their members aboutthe contents of the European Union Written Declaration.Consequently, the Senate’s Standing Committee on Hygieneand Health responded to the invitation of the European Par-liament to raise awareness of the problem by organizinga fact finding investigation (6) to:1. assess the impact of endometriosis in Italy from botha social and an economic standpoint, and, thus, evaluatepotential direct and indirect costs;2. provide information and guidance for the adoption ofpublic policies consistent with the European and world-wide guidelines;3. identify Socio-economic health indicators for the dis-ease, potentially instrumental in reducing expensesand in directing dedicated economic resources.The ResultThe Senate Committee’s investigation concluded that endo-metriosis has to be recognized as a disease with an importanteconomic impact on the family and working life of a woman(e.g., lost days at work, lay-offs, having to change jobs, sickleave, time off for having surgery). The Committee also rec-ognized a significant association with health costs related toa diagnostic delay and therapeutic expenses including sur-gery, drugs, and assisted reproductive technologies (ART).The cost incurred by the Italian National Health System forhospital admissions for endometriosis was estimated at2,773.80 euros for each patient, totaling some 54 millioneuros per year.The 5-Year PlanConcluding that endometriosis needs to be viewed as a socialdisease, the Senate Committee has proposed the followingpolicy for implementation during the next 5 years (6):1286 Bianconi et al. Recognizing endometriosis as a soci1. Identification of specific disease indicators such asa dedicated diagnosis-related group (DRG) for reim-bursement, appropriately differentiated in accordancewith the various types of surgical interventions includ-ing the establishment of similar reimbursement tariffsnationwide;2. Promoting collaboration between the Ministry of Laborand Social Policies, the National Institute for Insuranceagainst Accidents at Work (INAIL), and the Institute ofSocial Medicine (INPS), and to highlight the burden-some effects on working conditions and on absencefrom work;3. Developing a process that will establish national refer-ral centers for the first treatment and centers of excel-lence for subsequent follow-up, including training ofpelvic surgeons;4. Encouraging research by allocating ad hoc funds andpromoting specific actions for the prevention of endo-metriosis in the context of the Community Action Plansfor Public Health;5. Setting up regional registers and a dedicated nationalregister;6. Developing solutions for providing pharmacologicaltreatment free of charge for those with long-term(chronic) needs for oral contraceptives (OC), GnRH an-alogues and other drugs for symptomatic relief;7. Developing a package of supporting measures forwomen with particularly severe or recurrent forms ofendometriosis that would include: free follow-up diag-nostic tests; free medical products to safeguard thehealth and fertility of these women; and, the assignmentof a stage of disability under Act no. 104 of February 5,1992, for severe cases where the psychological andphysical state of health of the patient, who undergoesseveral surgical interventions, is severely underminedand when there are major relapses and recurrent chronicpelvic pain;8. Carrying out health education and information cam-paigns in schools and for the public;9. Establishing a National Endometriosis Day for womenaffected by endometriosis.STEPPING FORWARDIn this article we have documented a process, which is basedon community action, where all stake holders have recog-nized that to truly address a disease as prevalent as endome-triosis, a strategic alliance between patients, physicians,scientists, and legislators is essential, if progress for millionsof women with endometriosis across the world is to becomereality. A disease, which has such a profound effect on soci-ety, needs to be recognized and dealt with by society.The very core of the Italian Senate’s Investigative Commit-tee’s findings summarizes the challenge of endometriosis:there is no cure, treatments are often ‘‘hit-and-miss,’’ thosewho treat endometriosis are often inadequately reimbursed,and there is too little data available to truly establish theal disease Vol. 85, No. 5, November 2007tremendous personal, financial, and socioeconomic burdenthat endometriosis leaves in its wake.In reaction to this we have seen, as a first in the EuropeanUnion’s history, a patient-triggered action, in collaborationwith physicians and open-minded politicians, which has re-sulted in the recognition of endometriosis at a EuropeanUnion level; and a country—Italy—has responded to theEuropean Union’s call for action and moved forward at anational level.The new strategic alliances, which have been formed asa result of the European Union and Italian initiatives, arean important step forward in addressing all aspects of endo-metriosis, including a call for action to: fund causal and preventive research; recognize that a chronic, multifactorial disease such asendometriosis needs to be treated in centers of excel-lence by a multidisciplinary team, and work towardthe establishment of such centers based on peer-re-viewed treatment guidelines (7); fund national and international awareness campaigns toreduce time to diagnosis, reduce ‘‘hit-and-miss’’ treat-ments, and ensure timely multidisciplinary expert care; establish national and international registries to monitormorbidity and effectiveness of treatment with a subse-quent aim to preserve fertility, improve quality of life,and reduce personal and socioeconomic burden.The achievement in the European Union, and in Italy, is anexcellent example of a new era of collaboration betweenFertility and Sterilitystake holders, which could have an unprecedented impacton the scientific community. It is now time for the EuropeanUnion and the countries therein—indeed countries acrossthe world—to heed the call for action set out in the 2005Written Declaration and provide resources for and regula-tion of the treatment of endometriosis. It is now time forall nations to follow the Italian example and recognize endo-metriosis as a disease that needs to be dealt with by societyas a whole.REFERENCES1. Kennedy S, Bergqvist A, Chapron C, D’Hooghe T, Dunselman G, Greb R,et al. on behalf of the ESHRE Special Interest Group for Endometriosisand Endometrium Guideline Development Group. ESHRE guideline forthe diagnosis and treatment of endometriosis. Hum Reprod 2005;20:2698–704.2. Hadfield R, Mardon H, Barlow D, Kennedy S. Delay in the diagnosis ofendometriosis: a survey of women from the USA and the UK. HumReprod 1996;11:878–80.3. Hummelshoj L, Prentice A, Groothuis P. Update on endometriosis.Women’s Health 2006;2:53–6.4. Simoens S, Hummelshoj L, D’Hooghe T. Endometriosis: cost esti-mates and methodological perspective. Hum Reprod Update 2007;13:395–404.5. Wallis D, Bowis J, Tannock C, Stihler C, Lambert J. European ParliamentWritten Declaration on Endometriosis. P6_DCL(2005)0013.6. Atti dell’indagine conoscitiva svolta dalla 12 Commissione Permanentedel Senato (Igiene e Sanita), XIV legislatura. Fenomeno dell’endometriosicome malattia sociale. Rome: Senato della Repubblica, 2006.7. D’Hooghe TM, Hummelshoj L. Multi-disciplinary centres/networks ofexcellence for endometriosis management and research: a proposal.Hum Reprod 2006;21:2743–8.1287

Recognizing endometriosis as a social disease: the European Union-encouraged Italian Senate approach

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Recognizing endometriosis as a social disease: the European Union-encouraged Italian Senate approach

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