Cardiomyopathies and rights: the AICARM webinar on disability, driving licences and new regulations

On April 23, 2025, AICARM hosted the third webinar of the series of meetings dedicated to cardiomyopathies, addressing a topic that deeply affects the daily lives of patients: rights in terms of disability, driving licenses and the initiatives promoted by the Association. The full recording of the meeting, available below, represents a resource for all those who wish to learn more about these fundamental aspects or were unable to attend the event. The webinar, moderated by Niccolò Maurizi, saw the participation of two highly experienced figures: Silvia Cecchi, Head of the OPLA Desk (Orientation, Welfare, Work Assistance), and Valerio Pelini, Vice President of AICARM and former General Director of the Tuscany Region.

Silvia Cecchi opened the meeting by illustrating the fundamental rights of patients with chronic diseases. The Italian Constitution protects these people through two main channels: national legislation and collective labor agreements. Among the most important protections are the sick leave, which prevents dismissal for health reasons, and the recognition of civil invalidity, which allows access to increasing benefits based on the recognized percentage. Law 104/92, dedicated to handicap, also offers specific support measures for those who risk social marginalization due to their condition. Finally, collective labor agreements establish, in addition to the sick leave, the economic treatment during illness and any provisions regarding the job performed. Civil invalidity reinforces what is established in the CCNL.

One of the most relevant innovations discussed was the disability reform introduced by Legislative Decree 62/2024, which came into force on an experimental basis from 1 January 2025 in nine Italian cities. This reform represents a real paradigm shift: the terms “handicap” and “invalidity” are replaced by “person with disability”, and the approach becomes multidimensional, considering not only the medical aspect but also the psychosocial one. The management of assessments passes from the ASL to the INPS, with pre-established times for visits: 90 days for ordinary requests, 15 for oncological cases and 30 for minors.

The second part of the webinar addressed the complex issue of driving licenses for patients with cardiomyopathy, a topic presented by Valerio Pelini. The current situation highlights a worrying lack of uniformity at the national level: provincial commissions act without shared criteria, generally granting annual renewals without distinction between the different clinical cases. Pelini emphasized how this practice does not take into account the differences between those who have a defibrillator for primary prevention and those who have it implanted after a cardiac arrest.

AICARM is actively working to obtain national guidelines that allow a more personalized and fair assessment for each patient. The Association is also supporting a bill on cardiomyopathies that, although not yet officially presented to Parliament, represents a concrete hope for the future. The bill aims to ensure early diagnosis, integrated management between specialists, simplification of care pathways and recognition of cardiomyopathy as a disabling disease.

During the webinar, participants asked many questions, demonstrating how these issues are felt by the patient community. The issues ranged from financial support for self-employed workers to procedures for requesting recognition of law 104/92, from the management of special licenses to the possibility of obtaining assistance for travel.

The “Cuori in Ascolto” service of AICARM confirms itself as a valuable tool to address these complex issues. As emerged during the meeting, the Association will continue to work to guarantee patients with cardiomyopathy a better quality of life and the full exercise of their rights, combining medical, legal and administrative skills in an integrated and human approach.

The next webinar, scheduled for the end of May, will address the topic of nutrition in cardiomyopathies with the participation of an expert known at national and international level. A further sign of AICARM's commitment to providing patients with concrete tools to better live with cardiomyopathy.