There are 5.4 million Italians affected by rheumatological diseases, often struggling with pain that undermines daily life, difficulties in treatment in the area and high costs. Now to give hope comes a bill that aims to reorganize and strengthen rheumatology in the healthcare system. The bill is presented today in the Senate on the proposal of Senator Maria Cristina Cantù, vice president of the Health Commission.
Overcoming inhomogeneities in care
In Italy over 5 million people suffer from rheumatological diseases and of these approximately 734 thousand have severe forms with a negative impact on the quality of life. There is a lack of an integrated rheumatology network between hospital and territory which creates disparities in care between one region and another. “The reorganization of rheumatology is a particularly relevant public health issue – he states Marcello Gemmato, Undersecretary of State for Health. We must ensure that patients can find answers to their questions and correct care in the area, without having to move and thus worsen the diagnostic delay. The desirable objective is the creation of a link between the hospital and the territory, with a greater offer of social and health services that operate as close as possible to citizens. Today there are numerous critical issues that are encountered, including great disparity in treatment and high costs.”
The bill for rheumatology
Enhancement of the role of the specialist, increase in early diagnosis and reorganization of care to respond to the needs of Italians affected by rheumatological diseases are the main themes of Bill No. 946 regarding ‘Reorganization and strengthening of health services in the field rheumatology’, presented today in the Senate. “This Bill comes to offer support to patients, specialists and those involved in local and hospital health services – he explains Maria Cristina Cantù, vice-president of the Health Commission. In fact, our proposal involves taking care of patients through an integrated approach by the referring rheumatologist and the general practitioner with a guarantee of updating the essential levels of services. The objective is therefore to ensure rapid diagnoses and specific treatments, counting on the National Health System, through the creation of a Network that guarantees the uniformity of therapeutic protocols prioritized for prevention and constant monitoring of the appropriateness of services”. Particular attention will be paid to fibromyalgia, systemic lupus erythematosus, systemic sclerosis and rheumatoid arthritis, among the most widespread pathologies and with the greatest repercussions on the quality of life of patients, both due to diagnostic difficulty and identification of the correct treatment.
The costs of rheumatological diseases
For complete patient care, full collaboration between specialists remains essential because each has its own specificities and the numerous differences between pathologies make an integrated approach necessary. “Early diagnosis – he explains Roberto Caporali, director of the Clinical Rheumatology Operating Unit Asst Gaetano Pini Cto-Milan – is particularly important for patients with rheumatoid arthritis. This disease costs the community over 3 billion euros every year, between direct and indirect expenses. Remission is possible in approximately 50% of cases, but for this to happen, early diagnosis is essential, which is rare. In fact, many sufferers wait up to 2 years to be able to give a name to their illness.”
Early diagnosis for effective treatments
There are more than 200 rheumatological diseases, they are on the rise and often affect people of working age and with young children, thus severely impacting the quality of life and the direct and indirect costs borne by the community. “One of the points on which it is most important to intervene – he underlines Gian Domenico Sebastiani, president of SIR, Italian Society of Rheumatology – is the diagnostic delay, which causes a worsening of health conditions, the accumulation of irreversible damage and consequently considerable inconvenience for patients and high social costs linked to disability and diagnostic and therapeutic pathways inappropriate. Current pharmacological treatments, in fact, are able to achieve the objective of remission and avoid irreversible damage, and are much more effective when they are established promptly”.
Strengthen rheumatology in the area
This also requires greater attention from general practitioners, who often visit their patients first and must quickly direct them to the local rheumatologist specialist. “There is therefore a need – continues Sebastiani – to strengthen rheumatology care in local clinics and hospital facilities, to reduce waiting times and guarantee patients assistance even in the most complex phases of the disease. All this must happen without losing sight of the statistical-epidemiological trend of pathologies in the population, in order to be able to evaluate how to distribute services so that they effectively cover the territory. Our goal is to find solutions to the problems that patients experience every day, from managing waiting lists to taking charge of local and hospital care.”
A three-level network
For years, SIR has been trying to reorganize rheumatology at a hospital and territorial level: “As SIR, we have created a ‘network model’ divided into three levels, territorial, hospital-spoke and hospital-hub – he declares Andrea Doria, director of the Rheumatology Unit, University Hospital of Padua. Health systems need to be adapted to guarantee high levels of care: the family doctor must be able to recognize signs and symptoms in order to refer the patient to a specialist, the rheumatology operating units must guarantee adequate beds both for the day hospital and for ordinary hospitalizations and be able to manage any pathology, with particular attention to rare diseases and serious cases. It is also essential that the figure of the rheumatologist is present in all local health authorities, with an availability of approximately 30 hours per week per 100 thousand inhabitants. Each Region should then provide simple, departmental and complex Operational Units”.
The national network for prevention
Rheumatology is also no exception to the disparity between North and South with regards to diagnosis and patient care. “This bill – he declares Ennio Lubrano of Scorpaniello, director of the Rheumatology Unit at the Cardarelli Hospital in Campobasso – would allow us to monitor the progress of rheumatological pathologies also through the establishment of the National Network for prevention, surveillance, diagnosis and therapies at the Istituto Superiore di Sanità, a tool that it would prove extremely important for the entire scientific community. It would allow us to apply uniform therapeutic and rehabilitation protocols throughout the Italian territory.”
The shortage of hospital beds
The issues of territorial inhomogeneity come to the fore especially when the most complex or serious patients require hospitalization. “The beds are lacking and poorly distributed – he adds Giuseppe Provenzano, director of Rheumatology Unit at Villa Sofia Hospital in Palermo. “At a local level, there is a lack of resources and insufficient assistance for the sick, who are therefore forced to make long searches to be able to turn to facilities that are often far from home, an action that not everyone has the opportunity to do. In this context, it is important to shine a spotlight on the difficulties in accessing medicines: too often the Regions have different timescales for obtaining treatments, with consequent discrepancies in treatment between patients. The establishment of Diagnostic-Therapeutic-Assistive Paths (PDTAs dedicated to rheumatological pathologies would be a great step forward in eliminating many difficulties”.
The role of scientific research
Scientific research is also fundamental: “Italian research – he declares Carlomaurizio Montecuccopresident of the Italian Foundation for Research in Rheumatology (Fira Ets) – is at the top internationally both in terms of number and quality of publications: a result of which we must be proud, but which must push us to achieve more ambitious goals, with investments that allow us to offer our numerous patients an increasingly better quality of life.”
The virtual rheumatology clinic
Technology certainly offers valid help today. “The implementation of telemedicine systems to improve continuity of care – he underlines Enrico Tirri, director of Rheumatology at the Ospedale del Mare in Naples – has a great impact, especially in remote areas and on fragile patients who are often unable to travel. One of the consequences is the reduction of inappropriate access to emergency rooms, which we know is a major critical issue at a national level. Like Sir, our commitment is already aimed at the development of these systems, also through the support of the National Agency for Regional Health Services. A virtuous example is our iArplus platform, capable of offering a virtual rheumatology clinic to be able to carry out televisits in complete IT security. Thanks to this Bill we will be able to launch information campaigns aimed at spreading greater knowledge of the symptoms of pathologies and raising awareness of the importance of contacting a specialist to encourage early diagnosis and reduce the development of chronicity”.