2023-10-12 13:06:13
The commitment made by Parliament in favor of patients with rheumatological diseases must be respected: all the Regions and Autonomous Provinces must establish – as expected – the tables and working groups on rheumatological diseases, and involve the representatives of the more than 5 as soon as possible and a half million Italian patients. The complaint comes today on the occasion of World Rheumatic Patient Day. It is advanced by ANMAR (National Association of Rheumatic Patients) and the CAPIRE Observatory who also today organized a national conference in Rome in which representatives of clinicians and national and local institutions also participate.
“The regional tables are just one of the unimplemented points of the Unitary Motion on rheumatic diseases approved over a year and a half ago. So far there are very few signs of a concrete and real acceptance by the Government and local institutions of the commitments made by Parliament in March 2022″, says Silvia Tonolo, National President of ANMAR. “The establishment of the national table at the Ministry of Health cannot be postponed – continues Tonolo – rheumatological diseases can be truly disabling and are in fact the first cause of pain and disability throughout Europe”.
Rheumatological diseases, an exhibition dedicated to advertising to better understand the forms of pain by Irma D’Aria 05 September 2023
In Italy more than half of patients need help to deal with daily activities. Over 70% are forced to change their work duties due to disease symptoms. To these already complicated clinical conditions must be added the situations, sometimes truly dramatic, that they often find themselves experiencing. Sick people, family members and caregivers find themselves without reference healthcare facilities unless they are kilometers away and sometimes even in other regions. They are therefore forced to wait months before being able to have a first visit. To resolve all these problems – recalls Tonolo – it is essential, first of all, to immediately make the tables and working groups operational in all 21 of our local health systems. So far this has only happened in four Regions, also thanks to the requests and commitment of ANMAR and the territorial associations assisted by the Capire Observatory.
“It is urgent to intervene, also at a regulatory level, to develop guidelines that become binding for the Regions and other local institutions,” says Patrizia Comite, Legal Manager of the Capire Observatory. “The objective is to give homogeneous answers to all patients and avoid interpretative drifts of Law 232 of 2016 which undermine the right to therapeutic continuity, to the reimbursement of drugs included in the AIFA handbooks and to the supply of drugs that did not win the tender. It is necessary for the State-Regions Conference to draw up the programmatic lines to achieve the appropriate homogeneity in the rules for purchasing available medicines. The clinician’s prescribing autonomy must be protected because in this way the patients’ right to receive therapeutically appropriate care is satisfied.”
Rheumatology, why it is important that patients do not abandon therapies by Irma D’Aria 27 June 2023
“From a clinical point of view, it is necessary to guarantee the possibility of prescribing all authorized drugs to provide the patient with every existing treatment opportunity,” adds Mauro Galeazzi, scientific director of the Capire Observatory. “The homogeneity of rules for the purchase of medicines is a criterion that cannot be postponed both to reduce differences in access to care and to avoid repercussions on patients’ rights. Assistance networks must then be organized that cover the national territory and monitoring services also through the tools offered by Telemedicine. In this way we can stop or at least limit healthcare migrations.”
From the national conference promoted today by ANMAR it clearly emerges that the improvement of care must also pass through a strengthening of primary care active in the territory. “One of the points of the Motion also includes initiatives in favor of the continuous training of general practitioners”, underlines Domenico Crisarà, National Deputy General Secretary of FIMMG/Italian Federation of Family Doctors. “In our opinion, this is a desirable measure, especially if we want to encourage early diagnoses, especially of the most serious forms of arthritis. In fact, we are the ones who must be able to intercept potential patients and direct them to the rheumatologist. It is obviously up to the Regions to make specialized healthcare facilities efficient while the waiting times to receive visits and consultations are still too long”.
“The one inherent to rheumatological diseases is truly an underestimated socio-health emergency in Italy – concludes Claudia Pietropoli, Member of the Presidential Council of FederfarmaNazionale and President of Federfarma Rovigo -. There is a need for greater commitment from all the actors involved because the impact of these pathologies is growing on the national healthcare system. For our part, as local pharmacists, we are present throughout the Peninsula. We can contribute, together with general practitioners, to increasing early diagnoses.”
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