A few days after World Cancer Day, which is celebrated on 4 February and which has the theme ‘Close The Care Gap’, the unified text of the bill regulating the conduct and permits for workers, public and private, affected by oncological and onco-haematological diseases.
An important step forward in the legislative process, the result of the hard work carried out by the 45 patient associations that belong to the group ‘Health: an asset to be defended, a right to be promoted’ which also includes a technical-scientific commission and a Parliamentary intergroup with which it works side by side to put in place feasible and sustainable proposals just like this bill which should lead to its final approval in 2024, thus facilitating the lives of workers living with cancer. According to the latest AIOM estimates, there were 395,000 new cancer diagnoses in and almost 4 million Italians today live with a solid neoplastic or blood disease.
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More attention to the needs of the sick
Satisfaction on the part of the 45 patient associations belonging to the Group which, in close collaboration with parliamentarians, without distinction of political colour, have been working for some time on the issue of behavior (time during which, in the event of absence due to illness or injury, the worker has right to keep their job) and permits for workers affected by cancer.
“The arrival of this bill in the Chamber is a step towards its approval, which we hope will be as rapid as possible in the interest of still productive patients who, in addition to having to deal with treatments and checks, encounter various difficulties in their work activity” , he declares Annamaria Mancuso, president of Salute Donna Odv which turns 10 this year and Coordinator of the Advocacy Group. In recent years we have seen the institutions’ sensitivity towards the topic of cancer and above all towards the needs of patients and their families grow and this was by no means a given. Over time we have managed to build an open and interlocutory dialogue with the various political forces without distinction of colour”.
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Scientific progress but also humanization of treatments
In addition to the commitment to improve the daily lives of working patients, the Group’s objective is not to leave patients alone. “We want to improve their health and quality of life by bringing humanity into the oncology and onco-haematology departments which in our opinion must inevitably be combined with scientific progress. A lot of work awaits us but I am convinced that we will succeed with the support of clinicians, scientific societies and the parliamentary Intergroup to overcome obstacles, improve access to care and reduce the inequalities that still exist”, continues Mancuso.
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Carolyn Smith’s testimony
It is inevitable to be optimistic despite a cancer diagnosis, thinking of the 4 million Italians who manage to live with it today. Often even with a good quality of life. This is also evidenced Carolyn Smithdancer, choreographer and television star and testimonial of the event organized in Rome by the Group ‘Health: a good to defend, a right to promote’: “Patients must be able to become an active and proactive part of the choices that can change healthcare tomorrow. This is why I am here today: I speak for the many people like me who face the disease every day. I am convinced that my project ‘Dance for Oncology’ because as a dancer I was able to personally verify how much dance helped me both on a physical and psychological level. The positive effects of dancing are indisputable and are good for women and men of all ages and with different oncological paths. A way to help to rediscover light-heartedness, energy and new friendships”.
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What is needed to reduce disparities
The National Oncology Plan 2023-2027 dictates the guidelines for prevention, treatment and assistance to cancer patients and through an integrated multi-professional approach also aims to reduce the gap between the Italian Regions in terms of access to prevention and treatment, precisely the theme of 2024 edition of World Cancer Day ‘Close The Care Gap’. “2024 will be a very challenging year – says the Hon. Vanessa Cattoi – as an Intergroup we set ourselves several objectives: firstly, to allow cancer patients to participate in a structured way in decision-making processes in the healthcare sector; secondly, close the bill regarding hours of conduct and work permits for patients; We would then like to be able to schedule in the Commission the bill on the figure of the psycho-oncologist, which is very important for people affected by cancer and their families”.
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A training course for associations
The European Agency (EMA) has institutionalized patient involvement since 2005 while Italy has lagged behind. “For this reason – continues the Hon. Cattoi – we have presented as an Intergroup together with colleagues from the various participating political forces, a bill to institutionalize the presence of the Associations at decision-making tables on health matters. The involvement of patients is crucial for the their experience and expertise”. But to make the participation of patient associations concretely useful in a structured way in decision-making processes in the healthcare sector, the “Health: an asset to be defended, a right to be promoted” Group has been preparing its representatives since 2023 with the first specialization course in Italy in collaboration with the University of Pavia, the flagship of the Italian academic world. The course aims to provide the technical knowledge and practical tools necessary to conduct advocacy activities.
Financial sustainability
Are there the financial resources to achieve the objectives of the 2022/2027 Legislative Agreement? The 45 associations of the ‘Health: a good to be defended, a right to be promoted’ Group ask this with some concern because the risk is that everything remains only on paper. “The 2024 financial package on healthcare – recalls Sen. Guido Quintino Liris, coordinator of the parliamentary intergroup ‘Together for a commitment against cancer’ in the Senate – intervenes in particular on the allocation of 3 billion euros for contract renewals and for the reduction of waiting lists, and on the financing of the health fund for over 11 billion euros. Furthermore, healthcare will be able to benefit from 136 billion euros in investments, the highest budget allocation in recent decades.”