Explicitly include clinical centers for multiple sclerosis and related pathologies in the reorganization plans of national and regional hospital networks; insert multiple sclerosis and related pathologies among the pathologies to which the National Chronicity Plan dedicates specific attention, as conditions of high complexity and high impact for people and the country and structure the management of patients integrated with hospital care pursuant to the Ministerial Decree 77/2022, also with reference to the proximity networks referred to in Mission 6 of the Pnrr (Territorial Operations Centres, Community Homes, Community Hospitals); ensure the full implementation of the new Lea, referred to in the Tariff Decree, also with reference to the services necessary for the management of MS, including rehabilitation and aids as well as the genotyping tests necessary for the choice of treatment.
These are just some of the thirty concrete proposals for the country’s agenda starting from the life experience of people with the disease, collected in the Barometer of Multiple Sclerosis and Related Pathologies 2024 presented this morning by the Italian Multiple Sclerosis Association (Asim) to the Chamber of Deputies on the occasion of World MS Day.
Among the “30 work sites in the name of co-responsibility” promoted by Aism (the complete list on https://aism.it/sites/default/files/Carta_diritti.pdf) also: guaranteeing the disposal of lists of waiting for people with MS and related pathologies both for specialist visits and for laboratory and instrumental tests, with particular reference to access to MRI and guaranteeing screening, prevention and management linked to comorbidities; promote and support the use of telemedicine in MS, including tele-rehabilitation and remote psychological support, to integrate and complete in-person interventions and services, going beyond the fragmented trials developed in individual territories and fully recognizing the related pricing and reimbursement within the framework of the new LEAs, identifying MS and related pathologies as a specific area of experimentation.
And again: overcoming situations of restriction in access to disease-modifying drugs recorded in various territorial contexts, in particular for high-cost ones; Regions and healthcare companies must ensure that clinicians have all the authorized therapies available and can modulate them, from the start of the therapy, in the best interests of each patient, even for those residing in territories other than those of the care centre; ensure specific quality rehabilitation therapies for MS and related pathologies throughout the national territory, in all necessary settings including residential and for highly specialized services, and responsive in terms of quantity and type of treatment to individual needs.
That’s not all: the new therapies approved by AIFA for MS and related pathologies must be available without delay throughout the national territory at the network of MS Centers, reimbursement by the NHS must be ensured and the solutions must be concretely applied provided for by the Bill on healthcare and pharmaceutical simplification; removal of architectural barriers; the possibility of accessing mortgage, credit and insurance coverage.
Therefore, improving the awareness and skills of institutional stakeholders, the community and the media is one of the priorities that Aism seeks to achieve with its daily information and awareness work, with its own publications, as with campaigns such as ‘Portraits MS’ , which require to be carried forward over time, made one’s own, promoted and supported. However, the public debate and the information system also need to evolve in the way they deal with the issues of MS and disability, overcoming paternalism and sensationalism, and instead promoting the inclusion that arises from correct knowledge, knowledge that generates skills. And feed the evidence and data by collectively contributing to the design and dynamic updating of the MS Barometer. Finally, sign and concretely act on the Charter of Rights of people with MS, drawing inspiration and content from it for concrete action and incorporating its values for the expected change.
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