Data Card - Cohesion policy and research on multiple sclerosis
Multiple sclerosis is a neurodegenerative disease that affects the central nervous system: it is complex and unpredictable, but it is not contagious or fatal. Multiple sclerosis is characterized by an anomalous reaction of the immune defenses that attack some components of the central nervous system, mistaking them for foreign agents, which is why it falls under autoimmune diseases. Thanks to treatments and research advances, people with multiple sclerosis can maintain a good quality of life, with an expectation not far from that of those who do not receive this diagnosis. It is also for this reason that cohesion policies have invested in research and innovation projects, often linked to increasing and improving the predictive capacity of the onset of this disease, supporting universities, in projects also carried out in collaboration with enterprises in the pharmaceutical sector: it happened in all programming periods and from 2021-2027 the commitment to health also becomes the object of a specific national programme, the National Programme Health Equity, aimed in particular at 7 regions of Southern Italy classified as less-developed regions.
On the occasion of World Multiple Sclerosis Day celebrated on 30th May, a Data Card describes some of the financed projects aimed at financing the scientific research and to raise public awareness of the disease from which at least 2.8 million people suffer worldwide and this figure is certainly underestimated. It is no coincidence that the theme chosen for the 2024 and 2025 World Days is "Diagnosis", given that 83% of countries globally have conditions that make early diagnosis of the disease difficult and that however "is fundamental to allow early treatment with disease-modifying therapies that can minimize relapses and reduce future disability” and “also allows lifestyle changes to help manage multiple sclerosis” as explained by the MS International Federation, which promotes the Day.
In Italy there are 1 million people affected by multiple sclerosis: in addition to the 133,000 people with MS (2 out of 3 are women) there are their family members and caregivers, their relatives, friends, acquaintances, and their doctors, health and social workers, work colleagues, the entire local network. It is estimated that every year in Italy there are over 3,600 new cases (6 new cases per year per 100,000 people, 12 in Sardinia); mortality in Italy is estimated at 0.8 per 100,000 people. The average prevalence of multiple sclerosis for Italy is therefore estimated at around 215 cases per 100,000 inhabitants in mainland Italy, with the exception of Sardinia (400 cases per 100,000 inhabitants).
In 2022 was promoted a Charter of Rights for People with multiple sclerosis and related pathologies, their family members and caregivers, "providing thus a strong and united voice to all the people involved and looking forward to the future because many rights claimed by people with multiple sclerosis are the same as those claimed by those with another chronic disease or disability" explains the Italian Association for Multiple Sclerosis. The rights referred to are 10: to the 7 initially recognized in a first version of the Charter, established in 2014, which are Health, Research, Self-determination, Inclusion, Work, Information, Active participation, 3 have been added - Education and Training, Simplification, Innovation. The new Charter, which was also signed by the Minister for Disabilities in January 2023, also recognizes the role of family members and caregivers, who support those who have a diagnosis and are dealing with a chronic illness.
“Early diagnosis is essential to prevent the disease from evolving into the most dangerous progressive form. This day is an opportunity to raise awareness of support for research" the Minister said last year on the occasion of 2023, adding that "people cannot and must not be identified with their disease because everyone, in addition to the cure, needs to live a full and dignified life also from a social and relational point of view".