A photograph of multiple sclerosis and its reality in Italy with many chiaroscuro. It emerges from the Barometer of Multiple Sclerosis and Related Pathologies 2024, presented today on the occasion of the World Day at the Chamber of Deputies by Aism, (Italian Multiple Sclerosis Association) which reveals a critical situation and the need for immediate interventions. The annual social cost of the disease, which affects 140 thousand Italians (with 3,600 new diagnoses per year: 6 new cases per 100,000 people), amounts to approximately 6.5 billion euros per year between direct and indirect costs: on average for each 45,800 euros per year are spent on patients and the State takes charge directly, through public health and social services, of just under half (22,200 euros equal to 48%). Families bear 12% while the remaining 40% is borne by the community, mainly linked to the loss of productivity of patients and caregivers who stop working, and therefore generating wealth, due to the disease. Social costs increase as the disability increases: from 34,600 per person for a mild disability up to 62,400 for a severe disability but the share supported by the State remains unchanged. In fact, the country’s economic system and families bear the additional costs for the most severe disability, who end up spending around 14,000 euros a year out of their own pockets in severe cases, mostly for home care.
MS mainly affects women, three for every man, generally diagnosed at a young age, between 20 and 40 years old. Aism estimates that there are around 2,000 people in Italy with Nmosd – neuromyelitis optica spectrum disorders and the Mogad variant, rare pathologies very similar to multiple sclerosis which are followed in the same clinical centres.
The 2024 Barometer presents the data from the survey carried out this year on 180 of the 237 MS clinical centers present in Italy and those collected in 2023 on approximately 1,500 people with MS, together with those from institutional sources. SM Centers are the point of reference for over 90% of people, 70% of whom receive course-modifying drugs, which reduce relapses and slow down progression. Two-thirds of them receive therapy that they can do at home, and report that this autonomy improves their quality of life. The remaining 35% are administered therapy at the Clinical Centre, and many of these patients appreciate the opportunity to meet with clinicians or other patients.
The problems emerge above all in the delays in accessing MRI scans (36.2%) and check-ups (24.7%), and the needs that require integrated services are more often unsatisfied: rehabilitation (46.9%), psychological treatment (45.2%), symptomatic pharmacological treatments (39.3%) and home care (19.6%) which people indicated they had not received, or had received in an insufficient quantity compared to their need. The staffing crisis affecting the entire NHS – we read in the report – does not spare MS services, according to 2024 data each dedicated neurologist follows 558 patients and one nurse 477, values much higher than those indicated by Agenas (1 neurologist every 300/400 patients). Telemedicine, although it has enhanced remote response, is not yet fully integrated into the healthcare system, and the implementation of digital care also faces staff shortages.
The Barometer highlights the fundamental importance of caregivers in the daily support of people with MS. Especially people with moderate (47.2%) and severe (78.6%) disabilities need help and assistance at home, but over 20% are unable to receive it. Among those who receive it, 39.7% have a family caregiver, and more generally 55% can only rely on their own resources, and add that of paid staff to the time dedicated by the caregiver, while it stops at 17.1% the share of those who receive help only from public services.
Sm and Nmosd generate a significant risk of exclusion and discrimination, which over 75% indicate they suffer in daily life. The world of work (35%) is indicated as the context in which discrimination most often occurs, but bureaucracy and therefore the relationship with public services (34.9%) and financial services (20.7%) are also mentioned by high quotas. Those who receive the diagnosis during their education report significant impacts, 30% of those who were at university have lost years, and 18% have dropped out. The disadvantage therefore accumulates over time, and people often enter the world of work already vulnerable. Of those who do not work today, almost 60% have stopped doing so because of MS, and over half of these (34%) indicate that the work context did not suit their needs.
Accessibility, especially of spaces and public transport, remains a very frequent problem, and concerns not only 95% of those with moderate or severe disabilities, but also 45% of people with mild disabilities. It is one of the signs that SM and NMOSD are not known in society: over 90% believe that the general population knows little or not at all about them, and very similar shares express themselves in this sense regarding journalists, public office staff and private ones, and 51% also of non-specialised healthcare ones. On the other hand, the Italians themselves confirm this: according to the Doxa 2023 survey, 64% believe they know what MS is but incorrect beliefs remain widespread: 62% mistakenly believe that everyone has a serious disability and 41% are convinced that they cannot work.
During the presentation of the Aism 2024 Barometer, the signing of the Charter of Rights which celebrates 10 years this year was remembered. Among the objectives of the Charter: relaunching the challenge to MS; give a strong and united voice to the commitment of those who live with MS every day; give a strengthened identity to the Movement for a world free from multiple sclerosis. “Ten years of achievements that fill us with pride. Through Agenda 2020 and now Agenda 2025, we have responded to the needs of many people with MS and related pathologies – recalls Francesco Vacca, president of Aism – contributing to a more fair, equitable and inclusive. The MS Barometer has photographed the changes achieved, showing how rules, policies and processes have been rethought. Ten years ago, the Charter of Rights laid the foundations for a more inclusive and respectful society There is still a lot to do, but we are determined to continue improving the quality of life of people with MS and their families.”
“The Barometer is not just a set of data. It is the place where the priorities of the Agenda are explained and detailed by the individual people who have been listened to and questioned – underlines Mario Alberto Battaglia, President of Fism, the Aism Foundation – The Barometer expresses useful data to guide public interventions and the activities of our Association and our Foundation: the Agenda of people with MS is a strategic and operational contribution to the Country’s Agenda. Despite the progress made, much remains to be done improve the quality of life of people with MS and their families. The joint commitment of institutions, healthcare professionals and patient associations is essential to overcome these challenges and guarantee a better future for all people living with this complex pathology.” he concludes.
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