VIDEO | Multiple sclerosis, Aism: “Continuing emergency in Italy”
The association presents the 2024 multiple sclerosis and related pathologies barometer
ROME – A continuous social and health emergency. This is multiple sclerosis (MS) in Italy, a serious neurological disease that affects over 140 thousand people in our country, with 3,600 new diagnoses per year: 6 new cases per 100,000 people, 12 in Sardinia.
This morning, on the occasion of the World Day dedicated to the disease, the Barometer of multiple sclerosis and related pathologies 2024 was presented in the Sala della Regina of the Chamber of Deputies.
Elaborated annually by Aism (Italian Association multiple sclerosis), the Barometer offers an updated snapshot of the pathology and the picture that emerges reveals a critical situation and the need for immediate interventions.
The prevalence of multiple sclerosis is around 227 cases per 100,000 inhabitants in continental Italy, with the exception of Sardinia (estimate of approximately 420 cases per 100,000 inhabitants). These are mainly women, three for every man, generally diagnosed at a young age, between 20 and 40.
Aism estimates that there are around 2,000 people in Italy with Nmosd – neuromyelitis optica spectrum disorders and of the Mogad variant, rare pathologies very similar to multiple sclerosis which are followed in the same clinical centers.
FORMS OF MULTIPLE SCLEROSIS
MS in ’85 % of cases begin in the relapsing and remitting form, with periodic worsening followed by periods in which people feel better. After a certain number of years, recovery from relapses is less and less complete, and the worsening becomes progressive with accumulation of disability (secondary progressive form). There are effective drugs that slow this process, delaying the onset of serious disability. 10/15% of diagnoses concern the most serious form, which is already progressive at onset (primary progressive) and for which there are still no effective treatments.
THE ECONOMIC AND SOCIAL IMPACT OF THE SM
In Italy, the social cost of SM and NMOSD amounts to approximately 6.5 billion euros per year. The average annual cost per person is 45,800 and the State bears directly, through public health and social services, just under half (22,200 euros equal to 48%). Families bear 12% while the remaining 40% is borne by the community, linked above all 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 per year out of their own pockets in severe cases, mostly for home care.
THE CHALLENGE OF MS CENTERS IN ITALY: BETWEEN EXCELLENCE AND CRITICALITY
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. MS Centers are the point of reference for over 90% of people, 70% of whom receive course-modifying drugs, which reduce relapses and slow 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.
UNMET NEEDS
SM and NMOSD, however, generate complex needs, which services must respond to in a timely and coordinated manner. The problems emerge above all in the delays in accessing Magnetic Resonance Imaging (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 National Health Service 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 treatments also faces a lack of personnel.
I PDTA FOR THE MULTIPLE SCLEROSIS
The spread of PDTAs (diagnostic, therapeutic and care pathways) for MS, not only at regional level (14 approved in Italy plus 4 under discussion) but also at territorial level (passing from 25% in 2022 to 36.5% of the Centers that have one) indicates that the care system, and the MS Centers in particular, are open to innovative solutions, which offer integrated and person-centred care and rationalize their treatment paths care.
However, organizational obstacles remain, once again the lack of staff is the main one (indicated by approximately 80% of the Centres), but also the weakness of local and social services (approximately 60%) and the Administrative complications in the management and sharing of clinical data (57%) slow down the full implementation of PDTAs.
The participation of people with MS in decisions that concern them is not yet full and the share reporting stops at 30%. to be highly involved in decision-making processes relating to their health care and social services.
Promoting greater involvement is key to ensuring that their needs are adequately met.
Even the Access to policies and economic benefits that require disability assessment remains problematic for many: 60% of those who underwent it believe that the commission knew little about MS, almost 70% that it did not consider its symptoms invisible.
THE CRUCIAL ROLE OF CAREGIVERS
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.
LIFE PLAN: ACCESSIBILITY, DISCRIMINATION, SCHOOL AND WORK
MS 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 percentages.
Those who receive the diagnosis during their education report significant impacts, 30% of those who were at university lost years, and 18% left their studies. 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.
L 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 it, and very similar shares express themselves in this sense regarding journalists, staff of public and private offices, and 51% also of non-specialised healthcare workers.
This is confirmed by the Italians themselves, according to the Doxa 2023 survey, 64% believe they know what MS is, but widespread beliefs remain incorrect: 62% incorrectly believe that all of them have serious disabilities and 41% are convinced that they cannot work.
Battaglia (Fism): “Important barometer data for the country’s agenda”< /strong>
Aism (Italian Multiple Sclerosis Association) presented this morning in Rome, the Barometer of multiple sclerosis and related pathologies 2024. Developed annually by the Association, the Barometer offers an updated snapshot of multiple sclerosis and of the health and social emergency that the pathology represents in Italy.
“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 – explained Mario Alberto Battaglia, president of Fism (Italian Multiple Sclerosis Foundation) – The Barometer expresses useful data to guide public interventions and the activity of our Association and our Foundation: the Agenda of people with multiple sclerosis is a strategic and operational contribution to the Country’s Agenda. It is on data that health and social policies are built.
We start from the reality of the disease, of the people and above all from what we have achieved year by year. The data also gives us the perspective and commitment that we must guarantee, all together, to provide answers to people with multiple sclerosis. Despite the progress made – continued Battaglia – much remains to be done to improve the quality of life of people with MS and their families.
The joint commitment of institutions, healthcare professionals and patient associations it is essential to overcome these challenges and guarantee a better future for all people living with this complex pathology”.
Bandiera (Aism): “Four lines of mission are: health, social inclusion and disability,
scientific research , skills and communication”
There are 30 concrete proposals for the country’s agenda put forward by Aism (Italian Multiple Sclerosis Association) starting from the life experience of people with multiple sclerosis, photographed in the MS Barometer 2024 which was presented this morning in Rome
“The 30 construction sites represent a contextualisation of the Multiple Sclerosis Agenda for this year and next year and therefore retrace ours. four lines of mission which are: health, social inclusion and disability, scientific research, skills and communication”, explained Paolo Bandiera, director of institutional relations at Aism.
“On health, the Barometer shows us the path to follow : first of all to promote a pathology network that is increasingly consolidated, with dedicated staff, with the ability to dialogue with the territory, and to be fully within the networks of Ministerial Decree 70. But also rehabilitation, psychological treatment , and the importance of integrated home care. As regards the inclusion and disability area – Bandiera further explained – at the moment we are working on the full application of the disability law, decree 62 on the life project has just been released, we think that this is the main road to also go towards accompany our construction sites and to guarantee rights from the point of view of work, inclusion, the fight against discrimination”.
As regards scientific research “we come from a three-day conference in which the priorities for action have been outlined – Bandiera said – starting from an acceleration of the ability to translate the responses of innovation and research into concreteness and quality of life and therefore bringing research into treatment”.
< p>Finally, regarding information, Bandiera underlined how the theme is not “just disseminating correct knowledge of the pathology but also strengthening the skills of all professionals. Today – he concluded – is important to try to build a concrete action plan”.Vacca (Aism): “We have contributed to a more just and inclusive Italy”
The Charter of Rights of people with multiple sclerosis and related pathologies, their families and caregivers celebrates ten years. The Italian Multiple Sclerosis Association (Aism) recalled this this morning at the conference promoted by the Association at the Sala della Regina of the Chamber of Deputies, in Rome. “Ten years of achievements that fill us with pride – underlined the president of Aism, Francesco Vacca – Through Agenda 2020 and now Agenda 2025, we have responded to the needs of many people with multiple sclerosis and related pathologies, contributing to a more just, equitable and inclusive Italy.
The MS Barometer has photographed the changes achieved, showing how norms, policies and processes have been rethought. Ten years ago, the Bill of Rights laid the foundation for a more inclusive and respectful society. There is still a lot to do, but we are determined to continue to improve the quality of life of people with MS and their families”.
The Charter lists ten points ranging from the right to health to the right to active participation. Over 64,000 people have already decided to sign it, including many institutional representatives.
ROME – A continuous social and health emergency. This is multiple sclerosis (MS) in Italy, a serious neurological disease that affects over 140 thousand people in our country, with 3,600 new diagnoses per year: 6 new cases per 100,000 people, 12 in Sardinia.
This morning, on the occasion of the World Day dedicated to the disease, the Barometer of multiple sclerosis and related pathologies 2024 was presented in the Sala della Regina of the Chamber of Deputies.
Elaborated annually by Aism (Italian Association multiple sclerosis), the Barometer offers an updated snapshot of the pathology and the picture that emerges reveals a critical situation and the need for immediate interventions.
The prevalence of multiple sclerosis is around 227 cases per 100,000 inhabitants in continental Italy, with the exception of Sardinia (estimate of approximately 420 cases per 100,000 inhabitants). These are mainly women, three for every man, generally diagnosed at a young age, between 20 and 40.
Aism estimates that there are around 2,000 people in Italy with Nmosd – neuromyelitis optica spectrum disorders and of the Mogad variant, rare pathologies very similar to multiple sclerosis which are followed in the same clinical centers.
FORMS OF MULTIPLE SCLEROSIS
MS in ’85 % of cases begin in the relapsing and remitting form, with periodic worsening followed by periods in which people feel better. After a certain number of years, recovery from relapses is less and less complete, and the worsening becomes progressive with accumulation of disability (secondary progressive form). There are effective drugs that slow this process, delaying the onset of serious disability. 10/15% of diagnoses concern the most serious form, which is already progressive at onset (primary progressive) and for which there are still no effective treatments.
THE ECONOMIC AND SOCIAL IMPACT OF THE SM
In Italy, the social cost of SM and NMOSD amounts to approximately 6.5 billion euros per year. The average annual cost per person is 45,800 and the State bears directly, through public health and social services, just under half (22,200 euros equal to 48%). Families bear 12% while the remaining 40% is borne by the community, linked above all 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 per year out of their own pockets in severe cases, mostly for home care.
THE CHALLENGE OF MS CENTERS IN ITALY: BETWEEN EXCELLENCE AND CRITICALITY
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. MS Centers are the point of reference for over 90% of people, 70% of whom receive course-modifying drugs, which reduce relapses and slow 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.
UNMET NEEDS
SM and NMOSD, however, generate complex needs, which services must respond to in a timely and coordinated manner. The problems emerge above all in the delays in accessing Magnetic Resonance Imaging (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 National Health Service 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 treatments also faces a lack of personnel.
I PDTA FOR THE MULTIPLE SCLEROSIS
The spread of PDTAs (diagnostic, therapeutic and care pathways) for MS, not only at regional level (14 approved in Italy plus 4 under discussion) but also at territorial level (passing from 25% in 2022 to 36.5% of the Centers that have one) indicates that the care system, and the MS Centers in particular, are open to innovative solutions, which offer integrated and person-centred care and rationalize their treatment paths care.
However, organizational obstacles remain, once again the lack of staff is the main one (indicated by approximately 80% of the Centres), but also the weakness of local and social services (approximately 60%) and the Administrative complications in the management and sharing of clinical data (57%) slow down the full implementation of PDTAs.
The participation of people with MS in decisions that concern them is not yet full and the share reporting stops at 30%. to be highly involved in decision-making processes relating to their health care and social services.
Promoting greater involvement is key to ensuring that their needs are adequately met.
Even the Access to policies and economic benefits that require disability assessment remains problematic for many: 60% of those who underwent it believe that the commission knew little about MS, almost 70% that it did not consider its symptoms invisible.
THE CRUCIAL ROLE OF CAREGIVERS
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.
LIFE PLAN: ACCESSIBILITY, DISCRIMINATION, SCHOOL AND WORK
MS 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 percentages.
Those who receive the diagnosis during their education report significant impacts, 30% of those who were at university lost years, and 18% left their studies. 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.
L 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 it, and very similar shares express themselves in this sense regarding journalists, staff of public and private offices, and 51% also of non-specialised healthcare workers.
This is confirmed by the Italians themselves, according to the Doxa 2023 survey, 64% believe they know what MS is, but widespread beliefs remain incorrect: 62% incorrectly believe that all of them have serious disabilities and 41% are convinced that they cannot work.
Battaglia (Fism): “Important barometer data for the country’s agenda”< /strong>
Aism (Italian Multiple Sclerosis Association) presented this morning in Rome, the Barometer of multiple sclerosis and related pathologies 2024. Developed annually by the Association, the Barometer offers an updated snapshot of multiple sclerosis and of the health and social emergency that the pathology represents in Italy.
“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 – explained Mario Alberto Battaglia, president of Fism (Italian Multiple Sclerosis Foundation) – The Barometer expresses useful data to guide public interventions and the activity of our Association and our Foundation: the Agenda of people with multiple sclerosis is a strategic and operational contribution to the Country’s Agenda. It is on data that health and social policies are built.
We start from the reality of the disease, of the people and above all from what we have achieved year by year. The data also gives us the perspective and commitment that we must guarantee, all together, to provide answers to people with multiple sclerosis. Despite the progress made – continued Battaglia – much remains to be done to improve the quality of life of people with MS and their families.
The joint commitment of institutions, healthcare professionals and patient associations it is essential to overcome these challenges and guarantee a better future for all people living with this complex pathology”.
Bandiera (Aism): “Four lines of mission are: health, social inclusion and disability,
scientific research , skills and communication”
There are 30 concrete proposals for the country’s agenda put forward by Aism (Italian Multiple Sclerosis Association) starting from the life experience of people with multiple sclerosis, photographed in the MS Barometer 2024 which was presented this morning in Rome
“The 30 construction sites represent a contextualisation of the Multiple Sclerosis Agenda for this year and next year and therefore retrace ours. four lines of mission which are: health, social inclusion and disability, scientific research, skills and communication”, explained Paolo Bandiera, director of institutional relations at Aism.
“On health, the Barometer shows us the path to follow : first of all to promote a pathology network that is increasingly consolidated, with dedicated staff, with the ability to dialogue with the territory, and to be fully within the networks of Ministerial Decree 70. But also rehabilitation, psychological treatment , and the importance of integrated home care. As regards the inclusion and disability area – Bandiera further explained – at the moment we are working on the full application of the disability law, decree 62 on the life project has just been released, we think that this is the main road to also go towards accompany our construction sites and to guarantee rights from the point of view of work, inclusion, the fight against discrimination”.
As regards scientific research “we come from a three-day conference in which the priorities for action have been outlined – Bandiera said – starting from an acceleration of the ability to translate the responses of innovation and research into concreteness and quality of life and therefore bringing research into treatment”.
< p>Finally, regarding information, Bandiera underlined how the theme is not “just disseminating correct knowledge of the pathology but also strengthening the skills of all professionals. Today – he concluded – is important to try to build a concrete action plan”.Vacca (Aism): “We have contributed to a more just and inclusive Italy”
The Charter of Rights of people with multiple sclerosis and related pathologies, their families and caregivers celebrates ten years. The Italian Multiple Sclerosis Association (Aism) recalled this this morning at the conference promoted by the Association at the Sala della Regina of the Chamber of Deputies, in Rome. “Ten years of achievements that fill us with pride – underlined the president of Aism, Francesco Vacca – Through Agenda 2020 and now Agenda 2025, we have responded to the needs of many people with multiple sclerosis and related pathologies, contributing to a more just, equitable and inclusive Italy.
The MS Barometer has photographed the changes achieved, showing how norms, policies and processes have been rethought. Ten years ago, the Bill of Rights laid the foundation for a more inclusive and respectful society. There is still a lot to do, but we are determined to continue to improve the quality of life of people with MS and their families”.
The Charter lists ten points ranging from the right to health to the right to active participation. Over 64,000 people have already decided to sign it, including many institutional representatives.
ROME – A continuous social and health emergency. This is multiple sclerosis (MS) in Italy, a serious neurological disease that affects over 140 thousand people in our country, with 3,600 new diagnoses per year: 6 new cases per 100,000 people, 12 in Sardinia.
This morning, on the occasion of the World Day dedicated to the disease, the Barometer of multiple sclerosis and related pathologies 2024 was presented in the Sala della Regina of the Chamber of Deputies.
Elaborated annually by Aism (Italian Association multiple sclerosis), the Barometer offers an updated snapshot of the pathology and the picture that emerges reveals a critical situation and the need for immediate interventions.
The prevalence of multiple sclerosis is around 227 cases per 100,000 inhabitants in continental Italy, with the exception of Sardinia (estimate of approximately 420 cases per 100,000 inhabitants). These are mainly women, three for every man, generally diagnosed at a young age, between 20 and 40.
Aism estimates that there are around 2,000 people in Italy with Nmosd – neuromyelitis optica spectrum disorders and of the Mogad variant, rare pathologies very similar to multiple sclerosis which are followed in the same clinical centers.
FORMS OF MULTIPLE SCLEROSIS
MS in ’85 % of cases begin in the relapsing and remitting form, with periodic worsening followed by periods in which people feel better. After a certain number of years, recovery from relapses is less and less complete, and the worsening becomes progressive with accumulation of disability (secondary progressive form). There are effective drugs that slow this process, delaying the onset of serious disability. 10/15% of diagnoses concern the most serious form, which is already progressive at onset (primary progressive) and for which there are still no effective treatments.
THE ECONOMIC AND SOCIAL IMPACT OF THE SM
In Italy, the social cost of SM and NMOSD amounts to approximately 6.5 billion euros per year. The average annual cost per person is 45,800 and the State bears directly, through public health and social services, just under half (22,200 euros equal to 48%). Families bear 12% while the remaining 40% is borne by the community, linked above all 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 per year out of their own pockets in severe cases, mostly for home care.
THE CHALLENGE OF MS CENTERS IN ITALY: BETWEEN EXCELLENCE AND CRITICALITY
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. MS Centers are the point of reference for over 90% of people, 70% of whom receive course-modifying drugs, which reduce relapses and slow 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.
UNMET NEEDS
SM and NMOSD, however, generate complex needs, which services must respond to in a timely and coordinated manner. The problems emerge above all in the delays in accessing Magnetic Resonance Imaging (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 National Health Service 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 treatments also faces a lack of personnel.
I PDTA FOR THE MULTIPLE SCLEROSIS
The spread of PDTAs (diagnostic, therapeutic and care pathways) for MS, not only at regional level (14 approved in Italy plus 4 under discussion) but also at territorial level (passing from 25% in 2022 to 36.5% of the Centers that have one) indicates that the care system, and the MS Centers in particular, are open to innovative solutions, which offer integrated and person-centred care and rationalize their treatment paths care.
However, organizational obstacles remain, once again the lack of staff is the main one (indicated by approximately 80% of the Centres), but also the weakness of local and social services (approximately 60%) and the Administrative complications in the management and sharing of clinical data (57%) slow down the full implementation of PDTAs.
The participation of people with MS in decisions that concern them is not yet full and the share reporting stops at 30%. to be highly involved in decision-making processes relating to their health care and social services.
Promoting greater involvement is key to ensuring that their needs are adequately met.
Even the Access to policies and economic benefits that require disability assessment remains problematic for many: 60% of those who underwent it believe that the commission knew little about MS, almost 70% that it did not consider its symptoms invisible.
THE CRUCIAL ROLE OF CAREGIVERS
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.
LIFE PLAN: ACCESSIBILITY, DISCRIMINATION, SCHOOL AND WORK
MS 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 percentages.
Those who receive the diagnosis during their education report significant impacts, 30% of those who were at university lost years, and 18% left their studies. 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.
L 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 it, and very similar shares express themselves in this sense regarding journalists, staff of public and private offices, and 51% also of non-specialised healthcare workers.
This is confirmed by the Italians themselves, according to the Doxa 2023 survey, 64% believe they know what MS is, but widespread beliefs remain incorrect: 62% incorrectly believe that all of them have serious disabilities and 41% are convinced that they cannot work.
Battaglia (Fism): “Important barometer data for the country’s agenda”< /strong>
Aism (Italian Multiple Sclerosis Association) presented this morning in Rome, the Barometer of multiple sclerosis and related pathologies 2024. Developed annually by the Association, the Barometer offers an updated snapshot of multiple sclerosis and of the health and social emergency that the pathology represents in Italy.
“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 – explained Mario Alberto Battaglia, president of Fism (Italian Multiple Sclerosis Foundation) – The Barometer expresses useful data to guide public interventions and the activity of our Association and our Foundation: the Agenda of people with multiple sclerosis is a strategic and operational contribution to the Country’s Agenda. It is on data that health and social policies are built.
We start from the reality of the disease, of the people and above all from what we have achieved year by year. The data also gives us the perspective and commitment that we must guarantee, all together, to provide answers to people with multiple sclerosis. Despite the progress made – continued Battaglia – much remains to be done to improve the quality of life of people with MS and their families.
The joint commitment of institutions, healthcare professionals and patient associations it is essential to overcome these challenges and guarantee a better future for all people living with this complex pathology”.
Bandiera (Aism): “Four lines of mission are: health, social inclusion and disability,
scientific research , skills and communication”
There are 30 concrete proposals for the country’s agenda put forward by Aism (Italian Multiple Sclerosis Association) starting from the life experience of people with multiple sclerosis, photographed in the MS Barometer 2024 which was presented this morning in Rome
“The 30 construction sites represent a contextualisation of the Multiple Sclerosis Agenda for this year and next year and therefore retrace ours. four lines of mission which are: health, social inclusion and disability, scientific research, skills and communication”, explained Paolo Bandiera, director of institutional relations at Aism.
“On health, the Barometer shows us the path to follow : first of all to promote a pathology network that is increasingly consolidated, with dedicated staff, with the ability to dialogue with the territory, and to be fully within the networks of Ministerial Decree 70. But also rehabilitation, psychological treatment , and the importance of integrated home care. As regards the inclusion and disability area – Bandiera further explained – at the moment we are working on the full application of the disability law, decree 62 on the life project has just been released, we think that this is the main road to also go towards accompany our construction sites and to guarantee rights from the point of view of work, inclusion, the fight against discrimination”.
As regards scientific research “we come from a three-day conference in which the priorities for action have been outlined – Bandiera said – starting from an acceleration of the ability to translate the responses of innovation and research into concreteness and quality of life and therefore bringing research into treatment”.
< p>Finally, regarding information, Bandiera underlined how the theme is not “just disseminating correct knowledge of the pathology but also strengthening the skills of all professionals. Today – he concluded – is important to try to build a concrete action plan”.Vacca (Aism): “We have contributed to a more just and inclusive Italy”
The Charter of Rights of people with multiple sclerosis and related pathologies, their families and caregivers celebrates ten years. The Italian Multiple Sclerosis Association (Aism) recalled this this morning at the conference promoted by the Association at the Sala della Regina of the Chamber of Deputies, in Rome. “Ten years of achievements that fill us with pride – underlined the president of Aism, Francesco Vacca – Through Agenda 2020 and now Agenda 2025, we have responded to the needs of many people with multiple sclerosis and related pathologies, contributing to a more just, equitable and inclusive Italy.
The MS Barometer has photographed the changes achieved, showing how norms, policies and processes have been rethought. Ten years ago, the Bill of Rights laid the foundation for a more inclusive and respectful society. There is still a lot to do, but we are determined to continue to improve the quality of life of people with MS and their families”.
The Charter lists ten points ranging from the right to health to the right to active participation. Over 64,000 people have already decided to sign it, including many institutional representatives.
ROME – A continuous social and health emergency. This is multiple sclerosis (MS) in Italy, a serious neurological disease that affects over 140 thousand people in our country, with 3,600 new diagnoses per year: 6 new cases per 100,000 people, 12 in Sardinia.
This morning, on the occasion of the World Day dedicated to the disease, the Barometer of multiple sclerosis and related pathologies 2024 was presented in the Sala della Regina of the Chamber of Deputies.
Elaborated annually by Aism (Italian Association multiple sclerosis), the Barometer offers an updated snapshot of the pathology and the picture that emerges reveals a critical situation and the need for immediate interventions.
The prevalence of multiple sclerosis is around 227 cases per 100,000 inhabitants in continental Italy, with the exception of Sardinia (estimate of approximately 420 cases per 100,000 inhabitants). These are mainly women, three for every man, generally diagnosed at a young age, between 20 and 40.
Aism estimates that there are around 2,000 people in Italy with Nmosd – neuromyelitis optica spectrum disorders and of the Mogad variant, rare pathologies very similar to multiple sclerosis which are followed in the same clinical centers.
FORMS OF MULTIPLE SCLEROSIS
MS in ’85 % of cases begin in the relapsing and remitting form, with periodic worsening followed by periods in which people feel better. After a certain number of years, recovery from relapses is less and less complete, and the worsening becomes progressive with accumulation of disability (secondary progressive form). There are effective drugs that slow this process, delaying the onset of serious disability. 10/15% of diagnoses concern the most serious form, which is already progressive at onset (primary progressive) and for which there are still no effective treatments.
THE ECONOMIC AND SOCIAL IMPACT OF THE SM
In Italy, the social cost of SM and NMOSD amounts to approximately 6.5 billion euros per year. The average annual cost per person is 45,800 and the State bears directly, through public health and social services, just under half (22,200 euros equal to 48%). Families bear 12% while the remaining 40% is borne by the community, linked above all 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 per year out of their own pockets in severe cases, mostly for home care.
THE CHALLENGE OF MS CENTERS IN ITALY: BETWEEN EXCELLENCE AND CRITICALITY
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. MS Centers are the point of reference for over 90% of people, 70% of whom receive course-modifying drugs, which reduce relapses and slow 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.
UNMET NEEDS
SM and NMOSD, however, generate complex needs, which services must respond to in a timely and coordinated manner. The problems emerge above all in the delays in accessing Magnetic Resonance Imaging (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 National Health Service 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 treatments also faces a lack of personnel.
I PDTA FOR THE MULTIPLE SCLEROSIS
The spread of PDTAs (diagnostic, therapeutic and care pathways) for MS, not only at regional level (14 approved in Italy plus 4 under discussion) but also at territorial level (passing from 25% in 2022 to 36.5% of the Centers that have one) indicates that the care system, and the MS Centers in particular, are open to innovative solutions, which offer integrated and person-centred care and rationalize their treatment paths care.
However, organizational obstacles remain, once again the lack of staff is the main one (indicated by approximately 80% of the Centres), but also the weakness of local and social services (approximately 60%) and the Administrative complications in the management and sharing of clinical data (57%) slow down the full implementation of PDTAs.
The participation of people with MS in decisions that concern them is not yet full and the share reporting stops at 30%. to be highly involved in decision-making processes relating to their health care and social services.
Promoting greater involvement is key to ensuring that their needs are adequately met.
Even the Access to policies and economic benefits that require disability assessment remains problematic for many: 60% of those who underwent it believe that the commission knew little about MS, almost 70% that it did not consider its symptoms invisible.
THE CRUCIAL ROLE OF CAREGIVERS
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.
LIFE PLAN: ACCESSIBILITY, DISCRIMINATION, SCHOOL AND WORK
MS 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 percentages.
Those who receive the diagnosis during their education report significant impacts, 30% of those who were at university lost years, and 18% left their studies. 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.
L 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 it, and very similar shares express themselves in this sense regarding journalists, staff of public and private offices, and 51% also of non-specialised healthcare workers.
This is confirmed by the Italians themselves, according to the Doxa 2023 survey, 64% believe they know what MS is, but widespread beliefs remain incorrect: 62% incorrectly believe that all of them have serious disabilities and 41% are convinced that they cannot work.
Battaglia (Fism): “Important barometer data for the country’s agenda”< /strong>
Aism (Italian Multiple Sclerosis Association) presented this morning in Rome, the Barometer of multiple sclerosis and related pathologies 2024. Developed annually by the Association, the Barometer offers an updated snapshot of multiple sclerosis and of the health and social emergency that the pathology represents in Italy.
“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 – explained Mario Alberto Battaglia, president of Fism (Italian Multiple Sclerosis Foundation) – The Barometer expresses useful data to guide public interventions and the activity of our Association and our Foundation: the Agenda of people with multiple sclerosis is a strategic and operational contribution to the Country’s Agenda. It is on data that health and social policies are built.
We start from the reality of the disease, of the people and above all from what we have achieved year by year. The data also gives us the perspective and commitment that we must guarantee, all together, to provide answers to people with multiple sclerosis. Despite the progress made – continued Battaglia – much remains to be done to improve the quality of life of people with MS and their families.
The joint commitment of institutions, healthcare professionals and patient associations it is essential to overcome these challenges and guarantee a better future for all people living with this complex pathology”.
Bandiera (Aism): “Four lines of mission are: health, social inclusion and disability,
scientific research , skills and communication”
There are 30 concrete proposals for the country’s agenda put forward by Aism (Italian Multiple Sclerosis Association) starting from the life experience of people with multiple sclerosis, photographed in the MS Barometer 2024 which was presented this morning in Rome
“The 30 construction sites represent a contextualisation of the Multiple Sclerosis Agenda for this year and next year and therefore retrace ours. four lines of mission which are: health, social inclusion and disability, scientific research, skills and communication”, explained Paolo Bandiera, director of institutional relations at Aism.
“On health, the Barometer shows us the path to follow : first of all to promote a pathology network that is increasingly consolidated, with dedicated staff, with the ability to dialogue with the territory, and to be fully within the networks of Ministerial Decree 70. But also rehabilitation, psychological treatment , and the importance of integrated home care. As regards the inclusion and disability area – Bandiera further explained – at the moment we are working on the full application of the disability law, decree 62 on the life project has just been released, we think that this is the main road to also go towards accompany our construction sites and to guarantee rights from the point of view of work, inclusion, the fight against discrimination”.
As regards scientific research “we come from a three-day conference in which the priorities for action have been outlined – Bandiera said – starting from an acceleration of the ability to translate the responses of innovation and research into concreteness and quality of life and therefore bringing research into treatment”.
< p>Finally, regarding information, Bandiera underlined how the theme is not “just disseminating correct knowledge of the pathology but also strengthening the skills of all professionals. Today – he concluded – is important to try to build a concrete action plan”.Vacca (Aism): “We have contributed to a more just and inclusive Italy”
The Charter of Rights of people with multiple sclerosis and related pathologies, their families and caregivers celebrates ten years. The Italian Multiple Sclerosis Association (Aism) recalled this this morning at the conference promoted by the Association at the Sala della Regina of the Chamber of Deputies, in Rome. “Ten years of achievements that fill us with pride – underlined the president of Aism, Francesco Vacca – Through Agenda 2020 and now Agenda 2025, we have responded to the needs of many people with multiple sclerosis and related pathologies, contributing to a more just, equitable and inclusive Italy.
The MS Barometer has photographed the changes achieved, showing how norms, policies and processes have been rethought. Ten years ago, the Bill of Rights laid the foundation for a more inclusive and respectful society. There is still a lot to do, but we are determined to continue to improve the quality of life of people with MS and their families”.
The Charter lists ten points ranging from the right to health to the right to active participation. Over 64,000 people have already decided to sign it, including many institutional representatives.