Rome, May 31 – Nearly one in two people with multiple sclerosis receives less assistance than they need; one in three complains about very long waiting times for MRI scans and reports that the effects of the pandemic are still being felt in the delays and irregularities of treatment pathways.
For one in four people, this also means having to wait for check-ups beyond the scheduled times, while the costs of care are often borne by them: diagnostic tests, home care, certifications, symptomatic drugs, rehabilitation, psychological support are indicated as burdensome for families and constitute an average annual expense of about 5.000 euros, which reaches 12.000 for those with serious disabilities and reaches 25.000 euros for families forced to spend more.
These are the data from the barometer of multiple sclerosis and related pathologies 2023, presented this morning in the Sala Capitolare of the Senate, in Piazza della Minerva in Rome, as part of the initiatives of Aism (Italian Multiple Sclerosis Association) for Multiple Sclerosis Week.
At the opening, the President of the Senate Ignazio La Russa and the President of the Chamber Lorenzo Fontana sent their greetings. The Minister of Health Orazio Schillaci also welcomed the initiative: "In all conditions of pain, fragility and suffering we must never forget that the protection of human dignity in the social and health sector represents an absolute and non-derogable value - he wrote in a message sent to the participants of the day - The defense of this principle guides the actions of the Ministry of Health aimed at guaranteeing access to the best skills and the most advanced services in the diagnostic, therapeutic and assistance fields".
The barometer, now in its eighth edition, offers a snapshot of multiple sclerosis and its reality in Italy with many light and shade, and highlights how multiple sclerosis still represents a strong health and social emergency. For this reason, Aism promotes the motion #milleazionioltrelaSM 2023, and invites people to sign the Charter of Rights of People with Multiple Sclerosis and Related Pathologies.
“Today I am relaunching the signature of the charter of rights, because the charter of rights must remain alive, it cannot be locked in a drawer - said Francesco Vacca, national president of Aism - These are rights that people with multiple sclerosis have strongly wanted. Today we have 61 thousand signatures but next year we want to have at least 140 thousand, one for each person with multiple sclerosis. Signing it is very important and you can do it from our website: with one click, you sign digitally”.
Presented on May 30, 2022, the new version of the Charter desired and promoted by Aism in 2014, consolidates the Association's mission in representing, protecting and affirming the rights of people with multiple sclerosis and related pathologies, their families and caregivers.
“One year after the presentation of the Charter, we are presenting the motions that must be accepted by the institutions to provide answers in terms of health,” explained Mario Alberto Battaglia, President of the Italian Multiple Sclerosis Foundation. “An approach that, with diagnostic-therapeutic care pathways, can make the right to have the appropriate services enforceable for every person with multiple sclerosis: having rehabilitation that is lacking today, having a psychological service and obviously having the drugs that can change the course of the disease. A path that must be accompanied by all those interventions that provide quality of life and inclusion because people have the right to live their life to the full, beyond the disease.”
The Minister of Disability Alessandra Locatelli reiterated the common commitment to build a dignified life project for every person with multiple sclerosis. "We must continue to say that work is everyone's right: the person should not be identified with his or her disease. Everyone can be a precious resource for the growth of our country in which to invest. We must do it as institutions, third sector, private individuals but also as individual citizens. And the challenge is precisely that of building a great common project.
A challenging task, but if we join together we can do it, because this is a time of great change and opportunity”. Together with Senator Beatrice Lorenzin, the minister then re-signed the Charter desired by Aism.
Paolo Bandiera, Director of General Affairs and Institutional Relations of Aism, explained on the sidelines of the event that "from a health point of view there is progress, but we have not yet emerged from the long wave of the pandemic and we must clear the delays from a diagnostic point of view and the recovery of services that have remained pending".
In this sense, the barometer "provides valuable and useful information that from the reconstruction of the problem already gives us proposals: we have in fact translated the data of the barometer into a motion that makes the priorities on which to intervene actionable and applicable also in the eyes of politics".
And the priorities are the 30 points listed in the motion #1000azionioltrelaSM 2023, 30 work sites under the banner of co-responsibility: from the request to include multiple sclerosis clinical centers in the reorganization plans of national hospital networks, to that of including multiple sclerosis among the pathologies to which the National Chronicity Plan dedicates specific attention. From ensuring the elimination of waiting lists for people with multiple sclerosis, to the commitment to promote and support the use of Telemedicine in multiple sclerosis.
For Maria Teresa Bellucci, Deputy Minister of Labor and Social Policies, recognizing the dignity of people with multiple sclerosis "must not only be a commitment expressed in words but must become concrete where new policies are designed. It is not easy to deal with multiple sclerosis, because it changes the way of seeing life, of being. But in this, realities like Aism become great opportunities to find new balances to build. The State can do a lot, working together". In conclusion, the President of the Friuli-Venezia Giulia Region, Massimiliano Fedriga, highlighted the importance of guaranteeing the same levels of assistance throughout the national territory.
Vincenzo Falabella, president of Fish, then added: “behind multiple sclerosis there are boys and girls, men and women who want to be represented for who they are: we want to overcome stigmas and prejudices that we still have to live with today”
Article published on May 31, 2023 - 19:10 pm
