Italy suffers from a serious regulatory lag in the recognition of vulvodinia. But how is the condition considered in other countries around the world? If in some states clear protocols of intervention and multidisciplinary teams cut down on the time of diagnosis and treatment, also reducing the economic impact of the disease, in other countries the lack of recognition burdens women in toto, on every front. In general, however, the picture, albeit amid difficulties and bureaucratic delays, is slowly changing thanks to thecommitment of associations and the increasingly focused attention paid to gender medicine. The common goal to be achieved? To make sure that vulvodinia, still too often considered an “invisible disease,” is recognized as a disabling condition. Which on the one hand would allow the health systems of different countries to support the high economic expenditure for treatment and on the other hand would help to break the taboo that, still today, leads to silence about the disease, hiding it in the case of those who suffer from it, not considering it adequately in the case of the professionals deputed to deal with it
WHO’s position on vulvodinia
At the global level, a key step toward the recognition of vulvodinia is the update of ICD-11, the International Classification of Diseases, which, on January 1, 2022, saw the WHO, the World Health Organization, include vulvodinia in the list of chronic pain-related diseases with code N94.81. What is the value of such a code? That of allowing physicians worldwide to make unambiguous diagnoses so as to facilitate data collection and research within the entire global scientific community
The Italian situation
In theory, WHO code assignment should be the main step for vulvodinia costs to enjoy health coverage. But the actual picture in many countries shows the opposite. Italy is the prime example. The lack to date of public recognition and inclusion of vulvodinia in the LEAs, the Essential Levels of Care, prevents access to exemptions and disability, also burdening the work stability of women who already suffer from a painful condition with a strong impact on their quality of life.
This is the backdrop to the August 2, 2023 bill that aims to recognize vulvodinia as a disabling disease by including it, along with neuropatia del pudendo, in the LEAs and thus guaranteeing exemption from healthcare costs. But not only that. Recognition is the key step in promoting specific training for medical personnel, funding scientific research for innovative therapies and organizing awareness campaigns. Other goals should follow from recognition, such as the establishment of specialized multidisciplinary regional centers, a National Commission to define homogeneous treatment guidelines, a registry to collect clinical data and a national fund of 20 million euros annually for research
The United States
In a country where the NVA, the National Vulvodynia Association, the world’s leading organization for the condition, is present, vulvodinia enjoys recognition as a public health problem, defined not just as a trivial inflammation but as a neuropathic pain condition. The NVA offers databases of certified specialists, and this is particularly effective in reducing the time to diagnosis, which in many other countries, including Italy, often stretches precisely because of the need to consult multiple specialists to arrive at a competent figure in the field. Although health care is a private affair in the U.S., the presence of standardized clinical protocols makes it easier for insurance companies to reimburse the costs incurred for the various therapies, not only pharmacological, that need to be undergone to treat the condition
The United Kingdom
The UK health care system recognizes vulvodinia as a chronic pain condition but not as a disabling disease. Claims for it are in each case assessed individually according to the impact the condition shows to have on daily life, with particular reference to work activity. Throughout the country, protocols have been prepared for primary care physicians so that they can refer patients to clinics specializing in the treatment of pelvic pain. In these facilities, vulvodinia is approached by a team consisting of a gynecologist, physiotherapist, and psychologist specializing in sex therapy who together arrive at the proposal an intervention plan covered by the public health system. Important associations such as the Vulval Pain Society work closely with hospitals to train health care personnel
France
There is still no official recognition of vulvodinia and full coverage of treatment costs by the public health system in the country. However, medical personnel boast solid training on the condition, which is taken into account in its severity by sending patients to Pain Centers, which specialize in the treatment of chronic pain
Germany and Northern Europe
In these countries, too, there is a lack of recognition of vulvodinia as a disabling disease: it is made part of the general picture of chronic pain, and the possible recognition of a state of disability, with consequent impediments for example in the work environment, is left to the assessment of the individual condition on a case-by-case basis.
As far as the treatment plan is concerned, special attention is paid to the functional rehabilitation of the pelvic floor: in Sweden, for example, physiotherapy reserved for this area is considered the basic treatment for vulvodinia and as such boasts much broader insurance coverage than in Italy.