Patients' rights: a reform in the experimental phase

Interview a Silvia Cecchi

di Francesca Conti

Let's start by recalling the main rights of adult working patients with chronic or serious pathologies, often little known, but guaranteed by Collective Labor Agreements (CCNL).

Adult working patients who have chronic, worsening or otherwise serious illnesses have many rights that are often not known. Some of these rights are included in Collective Labor Agreements (CCNL), which establish the sick leave period, or the period during which the person cannot be fired for health reasons. This period ranges from a minimum of 180 days per year and also includes economic treatment during illness. Depending on the sector and company, these rights can be further improved by local agreements. It is essential that workers are informed about these protections in order to be able to exercise them.

What are the legislative instruments that strengthen patients' rights, such as the recognition of civil invalidity and law 104/92?

The law strengthens the rights provided by the CCNL through two fundamental instruments: the recognition of civil invalidity and the recognition of Handicap, the latter regulated by the famous law 104/92. The recognition of civil invalidity establishes the percentage of impact that the pathology has on work performance, while law 104/92 offers support measures to those who, due to the pathology, are at risk of social marginalization or are unable to perform daily activities. Both of these measures give rise to increasing benefits. For example, with 46% civil invalidity, one can be considered a protected category, with benefits also for the company, and registered for targeted placement. With 51%, one is entitled to 30 days of leave per year for medical treatment, in addition to holidays and the sick leave, and so on up to 100%. Both laws also ensure economic and social support.

What does the disability reform introduced by Legislative Decree 62/2024 consist of and what are its main objectives?

From 1 January 2025, the disability reform provided for by Legislative Decree 9/62 came into force, on an experimental basis in 2024 Italian cities (Brescia, Catanzaro, Florence, Forlì-Cesena, Frosinone, Perugia, Salerno, Sassari and Trieste). This reform, included in the PNRR (National Recovery and Resilience Plan) and agreed with the EU bodies, provides for the definition of the disability condition, reasonable accommodation and multidimensional assessment for the development and implementation of a personalized and participatory individual life project. It is an important reform because it changes the way in which disability is seen: no longer only from a medical point of view, but also considering the psychosocial and biological spheres. Any type of disability, sensory, physical or intellectual, must not compromise the right to equality with other citizens. The reform abandons obsolete and potentially discriminatory terms such as “handicap” and “invalidity”, replacing them with “person with disability”. The aim is to ensure the recognition of the condition of disability, removing obstacles and activating the necessary support for the full exercise of civil and social rights.

What are the new features introduced by the reform regarding the evaluation procedures and the role of INPS?

The reform centralizes the evaluation procedures at INPS, which replaces the ASL in this task. INPS will set up multidisciplinary commissions composed of a medical examiner and two INPS doctors. The citizen may be accompanied by a member of his or her pathology association. The times for visits have been defined: 90 days for general disability, 15 days for oncological cases and 30 days for minors. As for the role of the family doctor, he or she will now have to draw up an introductory certificate on an INPS platform, which includes the anamnesis and an accurate description of the various stages of the pathology, with the upload of supporting medical reports. In addition to the family doctor, the certification can also be drawn up by hospital doctors, ASL doctors, private doctors, retired doctors, medical examiners and pediatricians. Once the introductory certificate has been entered, the citizen will have to enter his or her socio-economic data (marital status, taxable income, etc.) to access the recognized financial support.

What are the main critical issues that emerged during the experimental phase of the reform and how do you plan to resolve them?

The reform is currently being tested in 9 cities, and as with all trials, there are some difficulties. One of the main critical issues concerns the role of the certifying doctor, who must draw up a much more detailed and complex certificate than in the past. This requires greater commitment and, as a result, some doctors are asking for higher fees, which can reach up to 250 euros. This represents an obstacle for the most vulnerable citizens. Furthermore, there are organizational difficulties that we hope will be resolved during the testing period. The reform is scheduled to become fully operational on 1 January 2026, but a request for a postponement to 1 January 2027 has already been submitted, with the extension of the trial to 11 other cities. I am confident that, over time, these critical issues will be overcome. In this context, associations such as AICARM can play an important role, contributing to the needs of their members and those suffering from cardiomyopathies, making their know-how and resources available to facilitate access to the rights provided for by the reform.