“The problem of protection and assistance for people suffering from rare diseases”, such as amyotrophic lateral sclerosis (ALS), “is a real priority and the real priorities are addressed by allocating money, funds that on the one hand improve the activity of research, but on the other hand they guarantee socio-health care, the most adequate and suitable possible for the people who are entitled to it. We “as a Region” have the funds, but we cannot intervene if they are not authorized in some way centrally and this is the fundamental problem that needs to be overcome.” This was said by Guido Bertolaso, Welfare Councilor for the Lombardy Region, speaking in the Talk broadcast by Adnkronos.com during which the results of the ‘What Als Wants’ study were presented, a register that collects data on the experiences of patients with ALS, carried out by ‘Mario Negri Institute in collaboration with the Italian Amyotrophic Lateral Sclerosis Association (Aisla).
The Nemo Clinical Centers are “a flagship” for Lombardy. “Today there are 26 centers that take care” of people with ALS, “with a multidisciplinary approach” which also includes “research – underlines Bertolaso - In these centers we now welcome more than 300 patients with ALS and the regional health fund ” guarantees “almost 180 euros per day” per patient “to support these activities”. These are costs “that have not been revised upwards and certainly not downwards. If it is true, as Undersecretary Gemmato says, that the Ministry of Health is there and therefore the Government is there – concludes the councilor – then we expect to see concrete answers, concrete actions that put the Regions in a position to increase the budget to guarantee assistance” to these patients too.
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