Patient associations, an indispensable resource for social and health care reform

by Mario Alberto Battaglia

09 MAY

Dear Director,
the pressure to which the national health system was subjected with the multiplication of the first cases of Covid19 was a violent but vital stress test to bring to light the cracks in the systems of care and access to therapies in our country. In light of the pandemic tsunami, the need to strengthen emergency medicine and intensive care, in addition to the closure, has removed resources from the treatment of other needs such as chronic diseases, which hundreds of thousands of people in Italy have called for a long-term reform starting from the full application of the national chronicity plan.

Even before Covid19, photographed by the Multiple Sclerosis (MS) AISM Barometer, the hospital network and local medicine access system showed many flaws, beginning with taking responsibility for and managing patients of the network of hospital clinics despite the strong commitment of dedicated or involved operators, which in many cases are undersized in relation to real needs and reach a ratio of 1 to a thousand patients. In fact, for over a third of patients, the centers, the main reference point for managing health needs, were already difficult to reach.

The pandemic has increased distances and 42% of people with multiple sclerosis have not received the necessary health services as it worsens to 65% if we look specifically at rehabilitation. Only 22% of people with MS were able to receive at least part of the health care they needed, thanks to telemedicine services offered by their reference centers, which also showed vitality and reactive capacity on this front.

To further complicate the picture is the lack of PDTA (Diagnostic-Therapeutic-Assistance Pathways): only 59% of clinical centers anticipate them. The PDTAs, provided for in the 2016 National Chronicity Plan, are the main tool for the clinical management of chronic patients and for the definition of an integrated strategy linking the efforts of regions, local health authorities and hospitals to provide for themselves. even with the resources needed to provide services related to matters of particular complexity and impact on public health, such as MS. Furthermore, again according to the data from the AISM barometer, in more than one case out of three, even when the center acknowledges the existence of PDTA, this is not fully applied and is not linked to the territory with serious consequences for the continuous maintenance of patient care. way.

A fragile scenario on which the programming provided by the government within the National Recovery and Resistance Plan (PNRR) is grafted. The plan clarifies the reference to the need to strengthen local assistance through a strengthening of the network of structures and facilities – community centers, community hospitals, local operations centers – and greater involvement of third sector bodies would be strategic in the recognition system. and the management of the PDTAs and of the new territorial network, which must be fully integrated with the existing network of clinical centers, although this has not yet been sufficiently formalized and recognized. Patient associations play a key role in this process, committed to cutting edge in the realization of the concept of assistance proximity, with a unique know-how to define and apply therapeutic plans and take care of complex patients.

In fact, an assistance service centered not only on individual health services, but above all on the road, is becoming more and more important in the treatment processes – and in particular of chronic pathologies. A path where it is precisely the associations that often play the role of catalyst for requests and bring with them a wealth of competencies, which today are valuable for strengthening a national network more centered on patients’ real needs. A fact above all: the creation of the Italian Multiple Sclerosis Registry, which AISM and its FISM Foundation brought to life with the support of the National Network of Clinical Centers, which made it possible to collect data on the clinical path for 74 thousand people with multiple sclerosis in our country (out of a population of about 133 thousand people).

An important piece of information that also draws attention to one of the basic points contained in the PNRR: the need to simplify. The contribution of associations in recent decades to the creation of a culture of ‘shared data’ has, with the consent of patients, made it possible to increase and improve the capacity for assistance in therapeutic avenues and has enabled thousands of people to be conscious protagonists. in their own care path. A result that AISM has placed among the cornerstones of the 2025 multiple sclerosis agenda.

Mario Alberto Battaglia
Chairman of the Italian Multiple Sclerosis Fund (FISM) and Director General of the Italian Multiple Sclerosis Association-AISM

May 9, 2022
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