2023-06-15 18:17:09
In Calabria for patients with neurodegenerative diseases such as ALS, “something is finally changing. The work of the ‘Technical Table for Disabilities’ has achieved a first important objective: the recovery of years of enormous delays in the disbursement of national funds for non-self-sufficiency”. Thus Francesca Genovese, national councilor and president of Aisla Calabria, comments with satisfaction “the having managed to increase the care allowance up to a thousand euros in favor of non self-sufficient people and in vital dependence 24 hours a day”.
“After years of delay and dozens of families left without any financial support, the disbursement of funds has finally been released – explains Genovese – However, the critical issues are far from being resolved. Unfortunately, Calabria shows a very different panorama compared to other regions. We receive dozens of requests for help, sometimes due to a lack of specialist skills, others due to inadequate care. The question becomes even more delicate on the subject of the so-called ‘right to health’. Contrary to what is regulated by law 219/2017, there is no accompaniment to the conscious self-determination of one’s therapeutic choices with dramatic epilogues and where family members helplessly witness the suffering of the relative”.
According to the latest epidemiological studies – reads a note – there are an estimated 200 cases of ALS in Calabria, a disease that is still incurable but not therefore incurable. Adequate multidisciplinary management, if combined with an organizational model of care at home (Pdta, Diagnostic Therapeutic Care Pathway) significantly determines quality and life expectancy. Changing the perspective, starting with doctors and social and health workers – continues the note – is the objective of the second stage of the ‘road map’ that Aisla has launched throughout Italy on the occasion of the celebrations of 40 years of activity. The appointment in Calabria, entitled “The new welfare paradigm”, scheduled for June 28 in Catanzaro, in the presence, among others, of the president of the Calabria Region, Roberto Occhiuto. An afternoon of debate – concludes the note – which starts from considering the person as a “bearer of rights and protections: the right to a dignified life, for those who are faced with a disease such as ALS, but also protections for those who are responsible for treatment”.
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