Rome, 13 November (Adnkronos Health) – The parliamentary intergroup on multiple sclerosis and related pathologies was born, presented today in the Chamber. Intergroup is promoted by Aism (Italian Multiple Sclerosis Association) and Fism (Italian Multiple Sclerosis Foundation), with support from MP Luana Zanella and Senator Tilde Minasi, and membership of MPs from various sides of the Chamber and Senate.
This initiative was created to amplify the voices of more than 144 thousand people with multiple sclerosis and approximately 2 thousand people with neuromyelitis optica and diseases associated with anti-Mog antibodies (Mogad). It is a chronic and progressive pathology that strikes at a young age and affects the life of the entire family, designed to adapt to the unpredictable changes brought about by the disease and, in the most serious cases, providing daily assistance to the family caregivers. Overall, it is estimated that in Italy there are around 500 thousand people directly and indirectly affected by this pathology: patients, family members and caregivers who live every day with often complex health and social needs and face the challenges of full participation and social inclusion.
The Intergroup will operate as a transversal parliamentary space, promoting policy documents, hearings and legislative initiatives to give substance to the goals of the Multiple Sclerosis Agenda and turn hearings and discussions into political action.
“Multiple sclerosis is today an increasing challenge for our society, impacting thousands of people in an increasingly widespread way – Zanella, vice-president of the DPR Social Affairs Commission and vice-president of the Parliamentary Intergroup – underlines – In the face of this reality, it is important to encourage a joint and concrete commitment to build a political and social agenda centered on individuals and their needs. In line with the ‘1000 actions beyond multiple sclerosis’ movement, approved a year ago in the DPR, the goals of the Multiplex Sclerosis and related pathologies Parliamentary Intergroup aim at to encourage integration and dialogue between institutions, communities and scientific associations, networking skills, experience and knowledge to improve the quality of life of citizens with this pathology and their families.
“The creation of the Parliamentary Intergroup on multiple sclerosis and related pathologies – emphasizes Minasi, member of the Senate Social Affairs Commission and vice-president of the Intergroup – is a transversal political commitment that provides continuity to the directives already approved by the DPR with the ‘1000 actions beyond multiple sclerosis’ movement and with the launch of the Agenda 2030 consultation on MS promoted by Aism: from comparisons we turn to facts to give concrete answers to society and its families”. The priorities are clear: “Personalized and homogeneous care across the territory with a truly operational PDTA; continuity of care along the treatment pathway; support for research and full employment engagement. This work is also in line with the disability reform, currently being tested, which aims to make rights enforceable and simplify the path of citizens with multiple sclerosis and related pathologies”. The Senator stated “a clear political commitment: Intergroup will not be an exhibition, but a permanent workplace. We will take Aism’s demands to Parliament until they are turned into real options, so that the recognized rights become truly enforceable rights, without regional differences”.
“Over the years our community has been increasingly able to generate knowledge and propose concrete solutions, placing people with multiple sclerosis and related pathologies at the center of public debate – says Francesco Vacca, president of Aism – With Intergroup, this ability becomes part of the work of parliament: this means turning listening and discussion into political action, and building together with institutions, research and civil society a system capable of truly responding to the needs of health, inclusion and participation”.
“The birth of Intergroup represents an important recognition of the work of recent years and the correspondence between the Agenda for multiple sclerosis and related pathologies and the agenda of countries – said Mario Alberto Battaglia, president of Fism, the research agency of Aism – A stable political pact is necessary to transform scientific knowledge into equal access and enforceable rights for all”.
“This institutional step consolidates the lines of collaboration between the worlds of politics, science and the Third Sector – concludes Paolo Bandiera, director of General Affairs and Institutional Relations of Aism – Intergroup, under the joint leadership of Honorable Zanella and Senator Minasi, is a space for concrete discussions between Parliament, scientific and clinical communities and associations, supported by a large and competent scientific-technical committee. It is an operational tool to provide answers to more than 144 thousand people with multiple sclerosis and related pathologies and their caregivers”.
