2023-07-24 13:28:21
“The Ministry of Health and the Meloni Government pay great attention to people with fibromyalgia, also through constant dialogue with patient associations, the scientific world, but also with all the other political forces, so that all people with this pathology no longer feel alone or even worse invisible. The battle for the recognition of fibromyalgia is in fact a battle that knows no political color and which has seen various bipartisan parliamentary acts over time. Beyond the parliamentary commitment, as soon as it is possible to update the Lea , following the approval of the Tariffs decree which took place about two months ago, an assessment will be made of including the ‘severe fibromyalgia syndrome’ in the list of chronic and disabling diseases that give the right to exemption from participation in the cost of services”. Thus the Undersecretary of Health, Marcello Gemmato, commented on the initiative which saw Giusy Fabio, vice president of Aisf Odv (Italian Fibromyalgia Syndrome Association), together with other volunteers, climb on 22 July to the top of the crater of the island of Vulcano, in the Aeolian Islands, to raise awareness of the population on this pathology that affects about 2.5 million Italians and on the needs of these patients.
The initiative – explains a note – also wants to urge the institutions to approve the update decree which will formalize the pathologies just included in the essential levels of assistance. “For us – underlines Fabio – this is a very special moment because on the one hand fibromyalgia has been included in the Lea, but we are awaiting the update decree which will formalize the pathologies that have just been included in the Lea. Another important aspect to be urged – continues the vice president of Aisf – is the political path because various bills have been presented, most of them in the Senate, for the creation of a single text, therefore a very important law for us”.
In recent years Aisf Odv has chosen the link with earth/sky/water and fire for its challenges and this last element was missing. “This program involving the fundamental elements of nature (air, water, earth, fire) – continues Fabio – began in 2019 with the journey on the Via Francigena. From there I continued on the path of raising awareness in the area, meeting patients and above all making our presence felt with even sensational actions with the aim of turning the spotlight on the pathology and on the needs of patients. We therefore continued with the sail in 2021, docking in ports and with meetings with the administration and patients to make people feel our voice and then with the paramotor again in 2021”.
“Fire – specifies Melania Spataro, head of Central-Southern Italy of Aisf Odv – is the fourth of the elements that have accompanied us in the challenges of recent years, but it is also associated with our disease because fibromyalgia causes burning, pins and needles in various parts of the body, hot flashes and sweating”. This initiative was born from Aisf Odv “to sensitize public opinion, but also the medical class and the political class – adds Piercarlo Sarzi Puttini, president of Aisf Odv and professor of Rheumatology at the University of Milan – towards a pathology that is not yet recognized and is not sufficiently managed by the national health system”.
During the ascent the volunteers were supported by a volcanologist, Francesco Sortino, researcher of the National Institute of Geophysics and Volcanology (Ingv), Palermo section, and Gilberto Iacono, the delegate of the Municipality of Lipari for Vulcano who supported the initiative. “The Sicilian Regional Assembly and therefore the Sicily Region – remarked Fabio – has given its contribution both free and onerous to support the company, considering that the Sicily region has always shown great attention to patients and the association”.
The initiative received the patronage of: Ars, Sicilian Regional Assembly; Municipality of Lipari; Ingv; Paolo Procacci Foundation; Siempre, the Italian educational society of precision medicine; Association ‘My idea counts’; Pass part out; Pharmagens Health care; Avextra Pharma; Fusion Farm; Barber dog grooming. Facebook live coverage of the climb is available on the Aisf Odv association channel (facebook.com/AssociazioneAisfODV).
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