by Francesco Di Frischia
The world of politics and 45 cancer patient associations take stock of the work to be done in Parliament in the coming months.
The arrival in the Chamber of the bill to regulate hours of behavior (delay) and work permits for cancer patients. The proposed law on the inclusion of the psycho-oncologist within multidisciplinary teams for the care of patients. The participation of associations in decision-making tables on health matters. The elimination of waiting lists to strengthen and improve access to oncological screening for the early diagnosis of tumors. These are the objectives of the “Health: an asset to be defended, a right to be promoted” Group that emerged during a meeting held on 30 January in Rome, at Palazzo Wedekin, where the main stakeholders met for the second consecutive year on the occasion of World Cancer Day, the international day for the fight against cancer, which occurs on February 4, to raise public awareness, promote prevention and improve access to treatment.
The requests of the associations
For the occasion, all the political forces present and the Minister of Health Schillaci himself, in a recent speech, renewed their commitment to supporting the requests of the 45 oncology and oncology-hematology patient associations that are part of the Group. The exceptional witness of the day was the dancer, choreographer and television star Carolyn Smith, who for years has shared her experience with those who are facing the same path. The initiative’s slogan was the hashtag #ilcancrononhacolore, because, as the politicians who attended recalled, “when dealing with the needs and problems of cancer patients there are no political divisions”.
The Minister of Disability, Alessandra Locatelli, also spoke at the meeting: «The greatest achievement that can be achieved in this era, full of difficulties but which also offers many opportunities, is to put the person at the centre: I believe that no therapy can be truly effective without a humanized treatment path. This is an essential dimension, the only one that really allows us to give concrete answers for the future, for the care of patients. A person certainly needs therapy, all health aspects, but without the relational, emotional, social, sometimes even sporting and recreational dimension, that person is not truly free, there is truly no dignity in that life.”
The voice of patients
In fact, the commitment of all political forces in protecting the rights of oncology and onco-hematology patients has characterized the initiatives of the Group, which in 2024 celebrates ten years of activity and commitment in support of patients to implement feasible and sustainable proposals, that allow us to achieve the Group’s priority objective: humanizing treatments with psycho-social interventions that improve the health and quality of life of patients, and promote comprehensive care of the person affected by cancer. As the first step in the new year, yesterday the unified text of the bill regulating the conduct and permits for public and private workers suffering from oncological and onco-haematological diseases arrived in the Chamber for general discussion. An important step forward in the process that should lead to the final approval of the Bill in 2024. «We express satisfaction at the arrival in the Chamber of the bill for workers affected by cancer – says Annamaria Mancuso, president of Salute Donna Odv and coordinator of the advocacy group -. It 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. In these 10 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. The objective to be achieved is not to leave patients alone and 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 and improve access to treatment and reduce the inequalities that still exist”.
Humanization of care
Carolyn Smith recalled: «I am very honored to have participated in an event like this organized by bringing the voice of patient associations to institutional settings. Patients must be able to become an active and proactive part of the choices that can change the healthcare of 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 “Dance for oncology” project also includes psychosocial interventions to improve the health and quality of life of patients – she added – because as a dancer I was able to personally verify how much dance helped me both physically and physically. psychic. My training has been a great help to me. This is why I want to share my experience with those who are experiencing the same situation. 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 rediscover light-heartedness, energy and new friendships.”
How many sick people are there in Italy?
In our country, approximately 395 thousand new cancer diagnoses are estimated for 2023 (Aiom data): there were 390 thousand and 700 in 2022 and 376 thousand in 2020. Almost 4 million Italians currently live with a solid or blood neoplastic disease, in 2005 they were 2 and a half million. The 2023-2027 National Oncology Plan dictates the guidelines for prevention, treatment and assistance to cancer patients and calls for particular attention to care pathways through an integrated multi-professional approach in order to reduce the gap between the Regions in terms of access to prevention and care. The theme of the 2024 edition of World Cancer Day is in fact «Close The Care Gap», in line with the Group’s priorities. «2024 will be a very challenging year – noted MP Vanessa Cattoi (Lega), coordinator of the parliamentary Intergroup –. 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 proposed law regarding hours of conduct (delays) and work permits in favor of patients: we would then like to be able to schedule in the Commission the proposed law on the figure of the psycho-oncologist, which is very important for people affected by cancer and their families.”
The financial sustainability of care
The financial sustainability necessary to achieve the objectives of the 2022/2027 Legislative Agreement is not lost on the 45 patient associations of the «Health: an asset to be defended, a right to be promoted» Group. In this regard, Senator Guido Quintino Liris (FdI) of the Parliamentary Intergroup specified: «The 2024 financial package on healthcare intervenes in particular on the allocation of 3 billion for contract renewals and for the reduction of waiting lists, and the financing of the Health Fund for over 11 billion euros. Healthcare will also be able to benefit from 136 billion in investments, the highest budget allocation in recent decades.” As regards the participation of patient associations in a structured way in decision-making processes in the healthcare sector, since 2023 the Group has been preparing its representatives 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 and be an active part in redesigning the healthcare of tomorrow.
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January 30, 2024 (modified January 30, 2024 | 5:17 pm)
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