There are over 133,000 patients in Italy living with Multiple Sclerosis. Behind this number there are real people and families struggling every day with the needs of care that this pathology requires. What do they need? How is it possible to help them in practice? How can you help close the delays caused by the pandemic? How can the care provided by health facilities be improved? Questions that are finding answers and above all solutions thanks to the StayHome project developed by Biogen, in collaboration with the Italian Multiple Sclerosis Association (AISM). A project launched in 2020 in full pandemic emergency and now in its application phase in ten Italian Centers with the aim of focusing on the current situation, defining possible areas of intervention and future prospects, to enhance the home and the territory as an integral part of the disease management process.
The StayHome project and the Aism Barometer
The StayHome project fully reflects the ‘photograph’ taken recently by AISM with its Barometer of Multiple Sclerosis and related diseases 2022, which represents a map of the reality of the disease in Italy and the trend in levels of care and inclusion. The Barometer – to be read in parallel with the 2025 MS Agenda, the result of an analysis path of over 4,000 contributions, 250 comparisons with institutional representatives, 130,000 interactions conducted during the last year through the # 1000azionioltrelaSM campaign – clearly shows how the pandemic has exacerbated the distance not only between citizens and health reference points, but also between people with Multiple Sclerosis, the labor market and the rest of society. “Our involvement and commitment in the StayHome project – declares Paolo Bandiera, Director of General Affairs-Advocacy of Aism – arises precisely from the photograph that emerged from our Barometer and which is reflected in the analysis conducted by the ten Centers involved, with the ‘goal of providing solutions and tools to better manage people with MS even at home, by deploying multidisciplinary skills within a complex system of management and organization of health and social assistance resources “.
The delays accumulated due to Covid-19
From Alba, to Pavia, Mestre, Fermo, Rome, Naples, Catania, Cefalù and Sassari, the criticality that unites the MS Centers is linked to the delays in the services provided caused by the Covid emergency. Delays also recorded by the AISM Barometer, whose data show that more than 1 out of 2 MS centers have reduced their services during the pandemic and 40% indicate that they still have backlog of services to be disposed of, 16.5% for pharmacological treatments. In particular, the AISM Barometer shows how during the pandemic 86.7% of the centers reduced their neurological check-ups in the face of a shortage of staff: a shortage that today means that large centers are expected to attend on average, 1 neurologist for every 466 MS patients and 1 nurse for every 482 MS patients.
But the pandemic has made it clear how precious the support of telemedicine can be, at the same time highlighting our country’s delays in the digitalization of healthcare. Delays reported by the ten centers involved in the StayHome project which are reflected once again in the analysis of the Aism Barometer, which shows that 1 center out of 2 reports difficulties in data management and telemedicine due to a lack of IT equipment and infrastructures. Almost all centers, 9 out of 10, have started remote patient management methods, but only 1 out of 2 centers visits remotely, while telemedicine will have to be a reality of the present – 4 out of 5 people with MS consider it highly positive the digitization of services.
From analysis to action plan
All the Centers participating in the StayHome project in recent months have conducted a detailed analysis of the therapeutic and care pathway of the patient with Multiple Sclerosis, shedding light on the existing gaps in the home management of the disease, but also on what, instead, works as a multidisciplinary approach fundamental for the management of a complex disease such as this. The experts involved in the project are then working on the definition of an analysis document that outlines a management model of the patient with multiple sclerosis at home. This model is now being evaluated and applied within the 10 Centers involved who will have to implement an action plan aimed at providing an assessment of the economic impact that the implementation of the home as a care setting may have.
“The path that the StayHome project is tracing, through the Italian MS Centers, with the involvement of some of the leading experts in the field of Multiple Sclerosis and with the fundamental contribution of the Patients Association – says Giuseppe Banfi, CEO of Biogen Italia – is a path in continuous evolution, which is part of a transformation process already underway, in which the pandemic emergency has been a real accelerator of change. Our commitment, as a company that has been working for years on the search for new solutions to improve the lives of people who face Multiple Sclerosis, is increasingly focusing on digital health and digital medicine, because we are convinced that from ‘meeting between biology and technology, new solutions may be born, capable of improving care pathways, bringing them closer to the needs of people with MS, starting from greater proximity and full integration of the home setting in the pathways of disease management. The journey that StayHome is taking is very significant for us and we can’t wait to design the next steps, alongside the Patients’ Association, clinicians, healthcare facilities and all the stakeholders involved ”.