“The State recognizes vulvodynia as a chronic and disabling disease”: Giorgia Soleri and Damiano dei Maneskin at the conference – Video

“We ask that the vulvodinia and the pudendal neuropathy are recognized as chronic disabling diseases, to date the National Health Service does not cover the costs for these two syndromes “. This is the request that comes from the Vulvodynia and pudendal neuropathy Committee that today presented the bill in Rome during the conference “Vulvodynia and pudendal neuropathy: pain without a voice”. The goal is to have the two syndromes included in the Essential Levels of Assistance (LEA). Among the audience also Damiano dei Maneskin who accompanied his girlfriend Giorgia Soleri, who on social media told of suffering from vulvodynia.

At the conference they intervened in support of the proposal Pierpaolo Sileri, Undersecretary of Health, Annamaria Parente, president of the Senate Hygiene and Health Commission, Marialucia Lorefice, president of the Social Affairs Commission of the Chamber and representatives of various political forces. Parente, specifically, said she was willing to carry out, with the organizing committee and promoter of the conference and the bill, the path for the recognition of the two syndromes also at an institutional level, trying to obtain resources starting, first of all, by the next budget law. Sileri also expressed the support of the Ministry of Health, undertaking to create a fund similar to that of 2020 for endometriosis. In turn, Lorefice undertook to schedule the bill for the recognition of the two syndromes.

During the conference, a communication sent by the Minister of Education Patrizio Bianchi was also read, who expressed an interest in bringing a path on pelvic pain to schools as part of health education projects. In the audience, in fact, in addition to health professionals also several patients and activists, such as the model Giorgia Soleri who, after talking about her serious diagnostic delay and the high costs borne by those suffering from the two syndromes, concluded by saying: “L Article 32 of the Constitution protects health as a fundamental right of the individual and in the interest of the community, and guarantees free medical care to the indigent. So today I’m here asking myself: why doesn’t the state consider us individuals? ”.

The proposed law provides for the recognition of vulvodynia and pudendal neuropathy in the Essential Levels of Assistance as chronic and disabling diseases, the identification of a specialized public center in each region, the exemption from participation in public expenditure for the related health services , the establishment of a national commission aimed at issuing guidelines for the Diagnostic Therapeutic Assistance Plans and allocating the resources of the national fund established by the proposal itself, the construction of a national register for data collection, the promotion of compulsory medical training, funding for research support, facilitated access to teleworking and smart working for male and female workers and an increase in sick leave based on the severity of the disease, primary prevention activities in schools, awareness and information campaigns and the establishment of a national day pe r vulvodynia and pudendal neuropathy.

The proposal was written by the “Vulvodynia and Neuropathy of the pudendal” committee, which brings together the six associations that deal with these two syndromes in Italy (AIV – Italian Association of Vulvodynia Onlus, AINPU Onlus – Italian Association of Neuropathy of Pudendal, Casa Maternità Prima Luce – Vulvodynia Help Group project, Cistite.info APS, Vulvodiniapuntoinfo Onlus Association, VIVA Association – Winning Together Vulvodynia), by patients who experience diseases on their skin every day and by professionals who have distinguished themselves in the national territory for their commitment to research and treatment of these diseases. “These diseases are not rare, yet they are not recognized by medical staff and by society – the committee said – Currently there is such a gap in the role of the State and the Health Service in the treatment of these syndromes, that access is precluded in many cases. to treatment, due to the absence of trained specialists in public facilities, the high costs of treatment protocols, the high diagnostic delay caused by the invalidation of symptoms, dismissed as psychosomatic disorders, or by incorrect diagnoses. The consequences on the quality of life are very high and therefore the time has come for the State and the National Health Service to recognize and take charge of all this: these diseases exist and can be treated, they are not in our heads “.